Discussion Paper on hoarding and squalor 2012

Transcription

Discussion paper
hoarding and squalor
2012
Ageing and Aged Care Branch
Department of Health
Discussion paper
hoarding and squalor
2012
Discussion paper hoarding and squalor 2012
Acknowledgements
We would like to thank the various organisations and Victorian government departments
who generously contributed their knowledge and expertise to the development of this
paper.
If you would like to receive this publication in an accessible format, please phone
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© Copyright, State of Victoria, Department of Health, 2012
Published by the Ageing and Aged Care Branch, Victorian Government, Department of Health, Melbourne,
Victoria. This publication is copyright, no part may be reproduced by any process except in accordance with
the provisions of the Copyright Act 1968.
This document is also available in PDF format on the internet at:
www.health.vic.gov.au/agedcare/publications
Authorised by the State Government of Victoria, 50 Lonsdale Street, Melbourne
Except where otherwise indicated, the images in this publication show models and illustrative settings only,
and do not necessarily depict actual services, facilities or recipients of services.
Page ii of 131
Contents
Executive summary ...........................................................................................................................................1
1
Introduction..............................................................................................................................................4
2
2.1
2.2
2.3
2.4
2.5
2.6
2.7
Compulsive hoarding...............................................................................................................................5
Research .................................................................................................................................................5
International classification scales ............................................................................................................6
Defining compulsive hoarding .................................................................................................................6
Characteristics.........................................................................................................................................8
Animal hoarding.......................................................................................................................................9
Prevalence.............................................................................................................................................11
Age of onset ..........................................................................................................................................13
3
3.1
3.2
3.3
3.4
Domestic Squalor ..................................................................................................................................14
Research ...............................................................................................................................................14
Defining domestic squalor .....................................................................................................................14
Factors contributing to severe domestic squalor...................................................................................15
Prevalence.............................................................................................................................................16
4
4.1
4.2
4.3
Interrelationship between Hoarding, Squalor and Collectionism ..........................................................18
Compulsive Hoarding ............................................................................................................................18
Squalor ..................................................................................................................................................19
Collectionism .........................................................................................................................................19
5
5.1
5.2
5.3
5.4
5.5
5.6
Managing Risk.......................................................................................................................................20
Safety and security for people who hoard and/or live in squalor ..........................................................20
Fire ........................................................................................................................................................21
The legal system ...................................................................................................................................23
Eviction and homelessness...................................................................................................................23
Economic and social burden .................................................................................................................23
Media interest ........................................................................................................................................24
6
6.1
6.2
6.3
6.4
6.5
6.6
Effective intervention .............................................................................................................................25
What doesn’t work well?........................................................................................................................25
What does work well? ...........................................................................................................................27
Empowering and supporting workers ....................................................................................................30
Working within appropriate legislative environments ............................................................................31
Post intervention....................................................................................................................................31
Educating the community ......................................................................................................................31
7
7.1
7.2
7.3
Assessment and Testing tools ..............................................................................................................32
Assessment ...........................................................................................................................................32
Tools - hoarding.....................................................................................................................................32
Tools - squalor.......................................................................................................................................34
8
8.1
8.2
8.3
Service response...................................................................................................................................36
International/National ............................................................................................................................36
Victoria...................................................................................................................................................36
Other Key Stakeholders ........................................................................................................................48
9
9.1
9.2
9.3
Victorian response – strengths and weaknesses..................................................................................54
General themes .....................................................................................................................................54
Strengths ...............................................................................................................................................55
Weaknesses ..........................................................................................................................................56
10
Future policy and service response considerations ..............................................................................58
10.1 Service response...................................................................................................................................58
10.2 Public policy...........................................................................................................................................59
11
Conclusion.............................................................................................................................................63
Page iii of 131
Appendices
Appendix 1:
Appendix 2:
Appendix 3:
Appendix 4:
Appendix 5:
Appendix 6:
Appendix 7:
Appendix 8:
Appendix 9:
Appendix 10:
Appendix 11:
Appendix 12:
Appendix 13:
Appendix 14:
Appendix 15:
Appendix 16:
Appendix 17:
Client Case studies...................................................................................................................64
DSM5 Proposed diagnostic criteria ..........................................................................................65
Snapshot and commentary progressive cleanup of kitchen in squalid condition .....................66
New York City Hoarding Task Force ........................................................................................68
Examples of national service response ....................................................................................71
Saving Inventory Tool ...............................................................................................................86
Hoarding Rating Scale – Interview (HRS-1) .............................................................................88
Hoarding Assessment Tool ......................................................................................................89
Clutter Image Rating Scale.......................................................................................................92
Squalor - to rate cleanliness of a person’s accommodation.....................................................95
Living Conditions Rating Scale ...............................................................................................100
Victorian local service response .............................................................................................102
Department of Health Aged Care Community Service Organisations delivering Low Cost
Accommodation Support ........................................................................................................116
Department of Human Services – Housing and Community Building (SfHRT)......................117
Department of Human Services - Housing and Community Building.....................................118
MFB and CFA research studies .............................................................................................119
North and West Metropolitan Region Hoarding Training Needs Analysis report ...................121
List of Tables
Table 1 List of the most frequently hoarded items ….................................................................................……7
Table 2 Most common co morbidity in OCD hoarding ……………………… ............................................... …12
Table 3 Compulsive hoarding in illness unrelated to OCD......................................................................... ….12
Table 4 Findings from a cross-age study of severe squalor in South London …………………………… ... …16
Table 5 Health status of presenting squalor cases Central Sydney study ……………………………… ... …17
Table 6 Aspects of collectionism, self neglect and severe domestic squalor……………………………...... …19
Table 7 Preliminary typology of animal hoarders…………………………………………………………….. .......29
Table 8 Scope of Victorian service response……………………………………………………………… ...........36
List of Figures
Figure 1 Examples of hoarding……………………………………………………………………………… ..... …....8
Figure 2 Examples of squalid living conditions………………………………………………………………... …..17
Figure 3 Examples of electronic fire risk…………………………………………………………………… ...…….22
Figure 4 Examples of animal hoarding………………………………………………………………………… .. …30
Figure 5 Examples of difficult to access hoarding house and clean out of squalid living environment...........34
Figure 6 SfHRT Data report hoarding/environmental neglect/squalor July 2010 - May 2011…………… .. …43
Figure 7 Summary of SfHRT hoarding tasks July 2010- May 2011………………………………………… .. …44
Figure 8 Examples of hoarding households: combustible material………………………………………… .. … 53
Useful Resources
Acronyms and Abbreviations
References
Page iv of 131
Executive summary
Not all those who self-neglect or who hoard, live in severe domestic squalor and vice versa. Conditions
described as ‘compulsive hoarding’ and ‘severe domestic squalor’ are quite different from each other and
should be treated as such, they depend on individual circumstances, though at times may well coexist.
Compulsive hoarding
People who compulsively hoard are unable to resist the urge to acquire possessions and are unable to
organise or discard, even at the point of excess, which leads to cluttered living spaces.
Compulsive hoarding is not as yet a clearly diagnosed health condition in its own right. Currently it is coded in
the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders - DSM-4-TRTM
2000 - as one of the eight symptoms of obsessive compulsive personality disorder (OCPD).
The compulsive hoarding condition is pervasive, dominates time, space and personal functioning of the
person and others, contributing to unhealthy and unsafe living environments. It is evidenced by symptoms
such as severe impact on the person’s living environment, their work life, social patterns, health status, family
relationships, capacity to build and maintain friendships, diminishing financial means, enhanced likelihood of
engagement with justice, legal and civil authorities and cause of high distress with neighbours.
Research is still developing and findings are inconclusive. Recent evidence points to compulsive hoarding
1
being a genetically and neurobiological discrete entity.
Characteristics of a person with a compulsive hoarding condition:
•
They can be any age, socio economic group, geographic location, family group, employment status or
profession, level of education or standing in the community.
•
Hoarding behaviour is thought to begin in childhood or adolescence possibly as a result of some kind of
trauma or grief, but may not become problematic until later in life. The condition would always have been
present but not recognised or understood to the point of providing appropriate support.
•
As an adult they tend to be single and should they marry, tend to divorce and live alone. They often live
isolated lives, even if living with family. Accumulated items are a symptom of the condition, not a cause.
•
The social and health problems of a person who hoards remain largely untreated. Dementia brings a
sudden deterioration to any hoarding situation.
•
They may live in a government funded residential facility such as aged care, disability, family group
home, mental health service or supported and public housing. The person could be a ‘rough sleeper’, not
living in any one particular dwelling or place for any period, but could equally be living in their own home
in the community.
How common is hoarding?
2
•
In the general population compulsive hoarding is rare, though exactly how rare is unclear as an
epidemiologic study has not been undertaken.
•
Estimates range from 1 in 350 or 400 people in the UK as well as Australia. The number of problem
hoarders is possibly in the range of 60,000 to 90,000, but there is no research data available. It is
3
estimated there are as many as 1.2 million problem hoarders in the USA.
Domestic squalor
This term and definition seems particular to some Australian jurisdictions (particularly NSW). Severe
domestic squalor is not a diagnosis but a description of the appearance and perceptions of a dwelling which
reflect a complex mixture of reasons why a person, couple or group of people are living in such conditions.
How common is severe domestic squalor?
Few studies have systematically examined squalor in the Australian context. Cases differ greatly between
each other relating to so many other complexities including a person’s health status. Determining how
common squalor is rests on isolated research with discrete groups in specific geographic areas.
1 Saxena, 2007; Pertusa et al, 2008.
2 Mogan C., The Psychology of Compulsive Hoarding. Presentation Department of Human Services, Office of Housing. January 2010
3 Mogan C. The Psychology of Compulsive Hoarding, NATIONAL SQUALOR CONFERENCE. Sydney, November 5-6, 2009
Page 1 of 131
Current service response
International and national approaches to compulsive hoarding and/or squalor consistently present what works
and what doesn’t work from a clinical and practical perspective. These two perspectives must work hand in
hand to be best placed to comprehensively support people living in these environments.
Clinical intervention
Clinical treatment methods and approaches currently used are not that successful. Co morbidity is common
in OCD hoarding cases with 92 per cent having one additional psychiatric diagnosis.
People who hoard or live in squalor tend to be resistant to intervention so defining success is difficult.
Treatments for compulsive hoarding may contribute to improvement in cases where squalor is attributable to
restricted access, due to clutter.
Squalid living conditions relate to a complex range of causes, at times related to hoarding behaviours, but
other times to mental health and other conditions involving substance abuse.
Practical intervention
Practical intervention aims to support people with compulsive hoarding behaviours to successfully ‘reduce,
4
recycle and reuse’ (the three R’s).
There is common generic agreement internationally, nationally and in Victoria that quick fix clean-ups do not
work. Imposing controls and cleaning up without respecting the needs and health status of the person who
hoards, lead to rapid relapse and highly reinforce the resumption of hoarding.
It is better to understand the personal context, build rapport and motivation and target small improvements.
Achieving small goals and active collaboration between agencies (including treatment specialists when
5
appropriate), is the best and most effective type of service response.
Both hoarding and squalor interventions require the consent of the individual, a comprehensive assessment
including consultation/liaison with relevant services, advocacy and referral when appropriate.
The overall aim of intervention in a case concerning hoarding and/or squalor is to support the person to
achieve their planned outcomes, not to impose a standard of living. Often negotiated outcomes need to be
agreed to and met to address concerns of neighbours, fire risk, animal safety, environmental health, personal
safety and health issues of the person and others living on the same property, or in the vicinity.
One particular challenge for service providers is which other services to engage with and how, as sector
configurations are not always familiar nor used to working together. Sector connections need to be
established, knowledge shared, roles understood and good working relationships formed – with a willingness
to work together, knowing how best to respond.
Generally insufficient attention, resources and research have been committed to improve professional service
6
response to hoarding and squalor conditions as well as what defines an effective intervention.
Fire response
Fires involving hoarding properties present significant enhanced risk and cost for fire fighting departments.
Seventy per cent of residential hoarding fires responded to by the Melbourne Metropolitan Fire and
Emergency Services Board (MFB) are privately owned homes, as distinct from properties supported or
funded by government.
Intermittent local service response
Even though there has been a mushrooming of quite a broad range of service response in some parts of
Victoria from multiple sectors and disciplines, capacity to respond and resources are inconsistent particularly
in rural and regional Victoria.
Current local service response initiatives evidence duplication of effort and repetition with regard to education
for managers and workers, determining appropriate response methods and tools, understanding and
engaging with other appropriate sectors and providers and managing costs.
4 Gaston, R.L.et al, 2009
5 Mogan C., The Psychology of Compulsive Hoarding. Presentation Department of Human Services, Office of Housing. January 2010 .
6 Snowdon J.,Shah, A. and Halliday, G.,(International Psychogeriatrics, 19, 37-51) 2007.
Page 2 of 131
In some regions/local areas, where particular organisations have developed competence and leadership
responding to hoarding cases, other providers in those areas tend to refer rather than contribute a role
themselves.
This pattern may contribute to a culture of organisational behaviour that creates dependency rather that
capacity building. Staff in these leading organisations have stated they do not see this model sustainable as it
places too much of a burden on one organisation, does not build capacity in the region, nor understanding for
other organisations about how to provide the best support for the person or family concerned.
Future
A boutique response is not sustainable. The estimated numbers of people living with a hoarding condition
and/or in squalid living conditions are relatively small compared to the overall population. However, their need
for appropriate support does not diminish due to this fact. The associated impact on families and
communities also needs to be considered, combined with relative risk factors.
Due to the complex nature of the hoarding condition and the need to be tightly client centred in each case
(including appropriate care planning practice and assessment), a clear service coordination point in each
region needs to be recognised, one capable of dealing with complex cases, available and resourced to meet
the needs of all sectors and disciplines.
The solution to cases involving hoarding and/or squalor is not necessarily found in legislation and
enforcement, yet these are essential elements especially when risk extends to vulnerable groups such as
children, frail older people and animals.
7
Further discussion is required covering a range of perspectives such as ethical dilemmas and the tension
between public expectation versus duty of care of workers. In addition a range of sector concerns need to be
worked through to enable service system capacity to respond, for example Occupational Health and Safety
(OHS) issues and the responsibility of employers to ensure staff safety.
It is important to emphasise that compulsive hoarding cases in particular, as apart from squalor cases, are
very difficult to work with and that interventions achieve limited outcomes.
Victorian government response
Some stakeholders suggest a taskforce is required to adequately address the need to develop a uniform,
consistent clinical and practical service framework. Whether a taskforce is required needs to be considered. If
not a taskforce, then what strategy could be employed to further this work to achieve a similar outcome?
More research is needed with regard to both compulsive hoarding and severe domestic squalor to:
•
•
•
•
define good practice interventions
further explore how individuals with hoarding behaviours understand their situations
define more clearly the causes of squalor and hoarding
consider leadership for long term research, planning and resourcing, education.
Clinical indications appear promising and extremely hopeful that DSM-5, which is currently being planned
and prepared and due for publication in May 2013, will include hoarding diagnosed as a discrete condition
(refer Appendix 2). This new clinical status could mean that treatment might be able to be claimed on
Medicare; that greater capacity for researchers to obtain funds might be possible and the condition may well
be included in professional curriculum for medical students, social workers, psychologists, psychiatrists and
related fields.
Conclusion
Consideration needs to be given to a means of providing consistent best practice standards, clear guidance
to and basic education for the multiple sectors, professions and programs that respond to cases of
compulsive hoarding and/or squalor.
7 McDermott Shannon, Domestic hoarding and squalor: A review of the evidence. Social Policy Research Centre, Uni NSW. 2010.
http://www.communityhousing.org.au/S5%20conf%20papers%2010/D2_B4_Domestic%20Squalor_Shannon%20McDermott.pdf
Page 3 of 131
1
Introduction
The fact that people with hoarding behaviour and/or are living in squalid environments is not a new social
phenomenon, however public recognition of the problem and its related social and community impacts are
becoming better known, creating an increasing interest and expectation of a means to understand and
manage such circumstances.
Compulsive hoarding and acquiring is a debilitating problem and is more widespread than commonly
believed, either because sufferers are ashamed of their compulsions or because they don’t believe it is a
8
problem that merits professional attention.
A squalid situation usually presents itself with an accumulation of rubbish and an individual’s inability or
9
desire to not dispose of household waste.
The purpose of this discussion paper is to document what is known about hoarding and squalor behaviours,
circumstances, multiple sector frameworks as well as clinical and practical service response.
The objectives are to explore whether there is a role for the Victorian Government in this area; whether there
is a need to develop a service response and if so, identify what that response might be.
This paper scopes the following points, it:
•
discusses national and international research and evidence based perspectives on the subject of
‘hoarding’ and/or ‘squalor’
•
briefly defines ‘hoarding’ as distinct from ‘squalor’ and any interrelatedness
•
identifies current thinking and evidence with regard to effective service response and interventions
•
explores service needs taking into account:
-
service gaps
-
sector alternatives, and
-
consistency/alignment with higher level policy statements such as the Victorian Health Plan 2012 –
2022; Public Health and Wellbeing Plan 2011–2015, Mental Health, Disability, Protective Services,
Housing, Justice and Primary Industry
•
defines service response issues (including need) and associated considerations
•
identifies current service responses in Victoria (strengths and weaknesses)
•
considers future policy and service response options.
Clear themes and concerns emerge around the characteristics of people with hoarding behaviours, the
interrelationship between hoarding (as a mental health condition), squalor (as a living environment) and their
correlation points, at times co existing with multiple other challenging health and complex living conditions.
The fact that international clinical definition and effective treatment for people with a hoarding condition is still
unclear and challenging, is also mentioned.
The paper presents a sample of the types of service response to hoarding/squalor in Victoria, providing
information on the broad range of organisations and program types involved, all repeatedly educating and
defining how best to support the needs of people who find themselves living with these conditions. The issue
of capacity for services to respond is raised.
How many people live with a hoarding condition is not clear, how many live in squalor is also not clear,
though the estimates per head of population are small. There is no doubt the impact on the lives of these
people (whether they work or not) and those around them is extensive, the cost to their health, safety and
wellbeing is significant.
8 Steketee, G. and Frost, R. O. Compulsive hoarding and acquiring: Therapist guide. Source New York, NY US, Oxford University Press, 2007.
9 Catholic Family Welfare, Sydney, NSW. Australia.
Page 4 of 131
2
Compulsive hoarding
Most people enjoy acquiring and using their possessions and nearly everyone keeps some things they don’t
need or use. Hoarding is a fairly common behaviour in terms of keeping bits and pieces in case they become
useful in the future.
People who compulsively hoard keep things for the same reasons as anyone else:
•
•
•
for sentimental value, for example, emotional attachment or to remember an important life event
for utility value, that is the item is, or could be, useful
for aesthetic value, meaning the item is considered to be attractive or beautiful.
However, people with compulsive hoarding behaviour carry this to an extreme applying these values to a far
larger number of items. For them, ridding themselves of extra possessions is emotionally exhausting and
extremely difficult. Organising is difficult, and resisting the impulse to acquire (gather) new things is almost
10
impossible.
Acquisition occurs through purchasing, pursuing ‘freebies’, stealing, or a combination of strategies.
Commercial and non-commercial sites are utilised for purchasing including: garage sales, newspapers,
rubbish dumps and the internet.
The advantage of online purchasing for compulsive hoarders is that it reduces possible embarrassment when
purchasing multiple items. Persistent acquisition for some, leads to debt, theft of monies and depletion of
11
personal and family savings.
Compulsive hoarders acquire more items than non hoarders. The items may be similar; however acquisitions
are often multiples of identical items. Initially the hoard is organised, disorganisation transpires as volume
increases.
2.1
Research
Compulsive hoarding has received relatively little empirical study compared with obsessive-compulsive
disorder (OCD) and many of its subtypes. National and international research communities agree that the
precise nosology of compulsive hoarding has yet to be determined.
Recent data highlights a range of perspectives, including that compulsive hoarding can also be a standalone
problem:
•
Compulsive hoarding and saving behaviours are often associated with a number of psychiatric disorders,
including age-related dementia and cognitive impairment, but they are most commonly associated with
12
OCD and obsessive-compulsive personality disorder.
•
Some researchers suggested that OCD is the most common reason for people to excessively hoard
13
possessions and then to live in unclean conditions.
•
A recent Hong Kong (HK) study found that, ‘Over half the subjects had >90 per cent of the dwelling
covered by hoarded items, but only one subject was diagnosed as having OCD’.
•
Other research into the brain patterns of compulsive hoarders shows the disorder may have been
misclassified, suggesting that hoarding may be a distinct type of OCD.
•
‘When you are looking at obsession patients, hoarders seem to stand apart, and they don't respond well if at all - to standard anti-obsession treatments, which makes you think they might be a bit different’.
These researchers say: ‘Standard therapies for OCD often seem to have little effect at reducing these
particular symptoms’.
•
A UK study suggests, ‘Hoarding seems to be a non-specific symptom, as it has been associated with a
wide range of psychiatric disorders. Validating hoarding as pathological is controversial and its status
remains unresolved.
14
15
10 Steketee, G. and Frost, R. O. Compulsive hoarding and acquiring: Workbook. Source New York, NY US, Oxford University Press, 2007.
11 Tolin DF, Frost RO, Steketee G. Buried in treasures: help for compulsive acquiring, saving, and hoarding. Oxford University Press, 2007.
12 Frost and Gross 1993; Chiu
13 Saxena et al, 2002; Steketee & Frost, 2003
14 Chong & Lau, 2003.
15 Saxena. S., et al, 2007.
Page 5 of 131
•
Individuals with compulsive hoarding behaviour typically report levels of depression and functional
impairment that exceed those of patients with obsessive-compulsive disorder (OCD) and other anxiety
16
disorders.
The fact that compulsive hoarding occurs in psychiatric disorders other than OCD and in nonclinical
populations, has prompted the suggestion that the condition be viewed in generic terms as a ‘multifaceted
behavioural phenomenon’.
Growing evidence from epidemiological, phenomenological, neurobiological, and treatment studies suggests
17
that compulsive hoarding may be best classified as a discrete disorder with its own diagnostic criteria.
2.2
International classification scales
2.2.1 Diagnostic and statistical manual of mental disorders (DSM)
The American Psychiatric Association first published the DSM in 1952 with several revisions at irregular
intervals since then. The DSM is used to a greater or lesser degree around the world by health professionals,
insurance companies and pharmaceutical companies. Policy makers often refer to DSM when making
funding decisions.
Currently, compulsive hoarding is coded in DSM-4-TRTM 2000, as one of the eight symptoms of obsessive
compulsive personality disorder (OCPD).
In most individuals, compulsive hoarding appears to be a syndrome separate from OCD, which is associated
with substantial levels of disability and social isolation. However, in other individuals, compulsive hoarding
may be considered a symptom of OCD and has unique clinical features (refer Appendix 1: Case studies).
18
DSM-5 edition is currently being planned and prepared and is due for publication in May 2013. There is
19
strong anticipation from clinical stakeholders that hoarding will be included as a discrete disorder, severing
it from OCD. Hoarding is being considered for inclusion as a formal diagnosis in its own right, to be called
‘hoarding disorder’ with its own diagnostic criteria (refer Appendix 2). How compulsive hoarding is to be
represented in DSM-5 is as yet unknown.
2.2.2 International Classification of Diseases (ICD-10)
ICD was endorsed by the Forty-third World Health Assembly in May 1990 and came into use in WHO
Member States as from 1994 (first edition 1893). ICD- 10 presents an international standard diagnostic
classification for all general epidemiological, many health management purposes and clinical use.
Hoarding is not explicitly covered in ICD–10 and literature suggests that diagnosis of mental illness may
20
consequently be missed in this population.
2.3
Defining compulsive hoarding
There is no explicit definition of compulsive hoarding. Therefore the working model, treatment strategies and
even basic definitions of this syndrome are still under development.
Compulsive hoarding has frequently been considered a symptom (or symptom dimension) of OCD, its
21
diagnostic boundaries are still a matter of debate and can occur in the context of a variety of neurological
and psychiatric conditions.
2.3.1 Widely accepted international definition
Despite this, there is a widely accepted definition of the compulsive hoarding syndrome as suggested by
22
Frost, made up of three primary symptoms:
16 Frost, Steketee, Williams, & Warren, 2000.
17 Frost, Steketee, Tolin Comorbidity in hoarding disorder. Article first published online: 18 JUL 2011, DOI: 10.1002/da.20861, © 2011 Wiley-Liss, Inc. Depression and Anxiety. Volume 28, Issue 10, pages
876–884, 3 October 2011.
18 Refer: http://en.wikipedia.org/wiki/Diagnostic_and_Statistical_Manual_of_Mental_Disorders#cite_note-DSM-5_Publication_Date_Moved_ Halliday et al, 2000)to_May_2013-0#cite_note-DSM5_Publication_Date_Moved_to_May_2013.
19 Pertusa, Fullana, Singh, Et Al. Compulsive Hoarding: OCD Symptom, Distinct Clinical Syndrome, or Both? Extract: Am J Psychiatry 2008; 165:1289–1298
20 Gaston, R. L., et al, 2009.
21 Van Grootheest et al.
22 Frost & Gross, 1993.
Page 6 of 131
1. The acquisition of and failure to discard a large number of possessions that appear to be useless or of
limited value.
2. Living spaces are cluttered to the point that they can not be used for the activities for which they were
23
designed.
3. Significant distress or impairment in functioning, caused by the hoarding.
Frost suspects there are three categories of hoarders:
•
•
•
ordinary hoarders
animal hoarders and
trash hoarders.
The latter two seem much more severe, he says, but the dividing lines are murky and overlapping.
Hoarders compared with other clinical groups and community controls show significant difference in socio24
economic status (income).
2.3.2
The most frequently hoarded items
Table 1: List of the most frequently hoarded items
Description
Clothes
Greeting cards/ letters
Bills, statements
Books
Magazines
Knick-knacks
Mementoes/souvenirs
Records/tapes
Pictures
Sentimental objects
Recipes
Wrapping paper, materials
Papers, pens, gifts
Stationary, old things
Rank
1
2
2
3
4
5
5
6
7
8
8
9
9
10
25
% Endorsing
89%
79%
79%
77%
68%
66%
66%
64%
62%
60%
60%
58%
58%
56%
Other items include:
•
hobby/craft material: art materials, bells, bones, bottles of wine, craft projects, playing cards, post
stamps, rocks, sheet music, shells, timber, and loose wool.
•
information: advertisements, assignments, business cards, classic novels, old diaries, email, exercise
routines, footy records, holiday pamphlets, information, maps, medications (out of date), notices,
sayings/musings from self/others, school books, university notes.
•
personal: coats, dental floss, hair conditioner, jumpers, moisturisers and bubble baths from hotels,
perfume bottles, phone messages, photographs, shampoo bottles, shoes, shower caps, skin scabs, tooth
brushes, tooth paste.
•
sentimental: baby clothes, blankets from grandma, child art, children’s books, children’s school work,
collars from deceased dogs, dead plants, knitting from grandma, letters, little gifts, love letters, own notes
on rock or folk music events, pay slips, theatre or opera programs, toys, broken items I love which I
forget to mend.
•
useful things: broken things, building materials, dried food stuffs ( out of date) envelopes, fittings, glad
wrap washed and recycled, industrial waste, kerbside cast-offs with mechanical or Steptoe potential,
metal/tin, nuts and bolts, paper, bits and pieces of paper of all sorts, plastic, plastic bags, plastic
containers, product samples, recyclables, tin, wire, wood.
23 Frost and Hartl, 1996.
25 Mogan, C. Compulsive hoarding. Metropolitan Fire Brigade Burnley Workshop 2008.
Page 7 of 131
2.3.3
Causes of compulsive hoarding
Possible causes of compulsive hoarding include:
•
reacting to developmental and attachment deficits
•
maladaptiveness, abandonment issues
•
perceived lack of family warmth
•
uncertainty regarding self and others
•
distorted behaviours are used to bolster the self against loss, ambivalence, relationship issues
•
self-in-my things - Compulsive Hoarder
•
self/kinship-in-animals - Animal Hoarder
A study of hoarders
•
•
•
•
26
found that the most likely justification for keeping an item was:
future need (‘I might need this some day’), followed by
lack of wear or damage (‘this is too good to throw away’)
sentimental saving (‘this means too much to me to throw away) and
potential value (‘this may be worth something someday’).
Various studies explore correlations between life experiences and OCD, such as whether traumatic events
influence the clinical expression of compulsive hoarding. Initial associations were found to be robust, but
further examination revealed the clutter factor of compulsive hoarding (not difficulty discarding or acquiring)
27
was most strongly associated with having experienced a traumatic event.
Figure 1: Examples of hoarding
2.4
Characteristics
A hoarder will commence by collecting items that are important to them, such as newspapers, cosmetics,
magazines, mechanical items or clothing, things that potentially might have some potential future use but to
an objective outsider the need to collect such items is clearly overblown.
Some known characteristics of a compulsive hoarder are:
28
•
Compulsive acquisition - hoarders acquire extra things just in case, more than they'll ever use.
Compulsive acquisition can include buying and collecting free things, as well as discarded items (for
example, from rubbish bins or skips). Acquisition is often associated with euphoria or positive mood
states or can be used as a compensatory behaviour to soothe negative moods.
•
Disorganisation - hoarders find organisation difficult, so things end up in haphazard piles. The final
defining feature is extreme clutter in the home (or surrounding areas), office or car. Clutter typically
prevents the normal use of space and such daily activities as cooking, cleaning, and bathing.
26 Frost and Gross's, 1993.
27 Cromer, K. R., et al.Behaviour Research and Therapy 45(11): 2581-2592. 2007.
28 Cherian, A. E., et al. Title (2007). Treating Compulsive Hoarding. Psychological treatment of obsessive-compulsive disorder: Fundamentals and beyond. Washington, DC US, American Psychological Association:
231-249.
Page 8 of 131
•
Difficulty discarding – a compulsive hoarder can not throw anything away without experiencing severe
anxiety. The failure to discard worthless or worn-out objects results from the view that possessions have
value in excess of their true worth.
A compulsive hoarder will be very concerned about maintaining control over their possessions and often
perceive the items as extensions of themselves, not wanting to waste things or lose a connection with
something that reminds them of an important part or person in their life. They may also have difficulty making
decisions.
Psychosocial morbidity is higher in compulsive hoarders than in OCD non-hoarders. Many compulsive
29
hoarders never marry, family discord is common and 50 per cent are unemployed.
Hoarders are secretive, embarrassed and often ashamed by their predicament, avoid visitors, and live a
relatively solitary existence. This shame can at times be tempered with a sense of relief when somebody
comes to them with an offer of help.
Compulsive hoarders are not willing seekers of help, the situation is normally brought to the attention of
welfare, local government or public health authorities when something like fire or eviction occurs or there is a
problem. For example if the person lives in a flat, in a cluster of flats, and is behaving in a way that is
dangerous with regard to perceived fire risk, or the person themselves is just not keeping the terms of their
lease.
Many compulsive hoarders live and maintain external lives in jobs and social relationships outside of the
home. Colleagues, close family or friends are often totally unaware of the extent of the problem until an
incident of some type occurs.
The items hoarders acquire usually have some meaning to them but they can become less discriminative as
the disorder worsens.
In some cases the meaning of the hoarding behaviour can be more apparent when understanding the
person’s background. For example an elderly holocaust survivor who develops dementia can revert to the
types of behaviour that served them well in times of privation, such as when food was at a premium and
hoarding food was a survival mechanism. In later life, with a lack of recognition with where they are now, they
might revert to this type of food behaviour perceiving that it might be useful for them in the future.
All these characteristics lead a person to lose control of their environment and their capacity to manage it.
2.5
Animal hoarding
Animal hoarding is a specific type of hoarding, generally accompanied by other forms of hoarding like
possessions and objects. It is a poorly understood, maladaptive, destructive behaviour whose aetiology and
30
pathology are only beginning to emerge.
The Hoarding of Animals Research Consortium (HARC) was formed in the US in 1997 as an informal group
of researchers concerned about human and animal welfare. The group was interested in exploring the
problem of animal hoarding to find more effective and humane solutions, and brought together different
professional perspectives - animal welfare and humane law enforcement, sociology, forensic psychiatry,
social work and rehabilitation services, veterinary medicine, and hoarding psychology and intervention.
Until HARC was founded there had been almost no systematic research into this problem. Dealing with these
cases was left almost entirely to animal shelters and animal welfare workers. There was little recognition of
the human health implications of animal hoarding or the similarities to other kinds of compulsive hoarding.
2.5.1
Definition
Animal hoarding is recognised as a public health issue, formally mentioned in public health literature in 1999.
31
The published definition of an animal hoarder is someone who:
29 Winsberg ME, Cassic KS, Oran Lm. Hoarding in obsessive compulsive disorder: a report of 20 cases. J Clin Psychiatry 1999;60:591–7.
30 Patronek1G. J. & Nathanson J. N. 2. A Theoretical Perspective to Inform Assessment and Treatment Strategies for Animal Hoarders 1Animal Rescue League of Boston,10 Chandler St, Boston, MA 02116,USA,; 2
Boston, MA, 02131, USA.
31 Patronek G. J., Tufts University, Massachusetts. USA. Hoarding of Animals: An under – recognised Public Health Problem in a difficult to study population. Scientific Contributions. Public Health Reports.
January/February 1999.
Page 9 of 131
• accumulates a large number of animals
• fails to provide minimal standards of nutrition, sanitation, and veterinary care
• fails to act on the deteriorating condition of the animals (including disease, starvation and death) or the
environment (severe overcrowding and extremely unsanitary conditions), and
• fails to act on the negative effect of the collection on their own health and well-being and that of other
household members.
The Humane Society of the United States (1994) characterises animal hoarders as ‘people who accumulate
a large number of animals for whom they are unable to provide adequate care’.
2.5.2
Behaviour
Animal hoarding is a complex behaviour that results from a variety of psychological and behavioural deficits
that may limit a person's ability to care for themselves or others.
Although hoarding animals may start out as a seemingly benevolent mission to save them, eventually the
needs of the animals become lost to the person's need for control. The resulting compulsive care giving is
pursued to fulfil unmet human needs, while the real needs of the animals are ignored or disregarded.
Sometimes hoarders act as individuals and other times they masquerade as animal rescuers developing an
overwhelming sense of responsibility for the animals, believing they have an innate ability to communicate
32
and empathise with them.
People with animal hoarding behaviour should never be confused with these legitimate and worthwhile
efforts. However, a legitimate shelter, rescue or sanctuary puts the needs of the animals first, recognises
when capacity to provide care is exceeded, and takes the required steps (stopping intake, increasing
adoption, increasing staff or resources) in order to provide proper care.
Animal hoarders have lost touch with reality and as a result keep their animals in over-crowded conditions
33
where they can suffer from starvation, disease, behavioural problems and eventual death.
The owner fails to act on the deteriorating condition of the animals, denies neglect of the animals, considers
that appropriate care is provided despite evidence to the contrary, and is reluctant to surrender the animals
for fear of euthanasia.
Animal hoarders tend to think the animals they look after are well cared for although objective reality
suggests the opposite is usually the case. The failure to discard of animal droppings and the consequent
34
smells that arise from living situations will often bring an animal hoarder to attention.
Seventy-six percent of animal hoarders are women aged 60 plus years, residing alone, who also tend to
35
hoard inanimate objects. However, animal hoarders can be found across all demographics – both genders,
all ages, all family situations and across the socio-economic spectrum.
Animal hoarders live in every community and are not always unemployed nor live alone. It is estimated that
36
there are three to five thousand cases each year in the US, involving up to 250,000 animals.
2.5.3
Victorian animal hoarding study
37
A recent Victorian animal hoarding study sent a questionnaire to the coordinator of animal management in
each of the 79 local municipal Councils in Victoria, with a 75 per cent (59) response rate.
Analysis of the 59 questionnaires returned suggests that:
• Two-thirds of respondents had experience with animal hoarding (41 out of 59 responses).
• Eighty-one cases were reported between October 2009 and October 2010 in Victoria, equating to an
average of 1.4 cases inspected per council or one case for every 50,711 people over the 12 month period.
32 Snyder 2009.
33 Vaca-Guzman and Arluke 2005.
34 Macfarlene S., Director Caulfield Aged Psychiatry Service, Caulfield Hospital. Melbourne. Australia. Extract: Working with People with Hoarding Behaviours DVD. Pub 2010. Copyright Vision Australia 2010.
35 Frost RD. People who hoard animals: Hoarding of animals Research Consortium. Psychiatric Times 2000;XVII(4).
36 International OCD Foundation http://www.ocfoundation.org/hoarding/types.aspx
37 Bennetts, C., The Extent of Animal Hoarding in Victoria. November, 2010. Research project report, part of a Masters degree in Animal Science. University of Melbourne.
Page 10 of 131
• The main species hoarded was cats (48 per cent ), dogs (28 per cent), livestock (14 per cent), other
(8 per cent) and wildlife (1 per cent).
• Fourteen councils seized animals due to welfare concerns in 75 -100 per cent of cases.
• The majority of councils believe the animal hoarding problem is remaining stable.
An outcome of the study suggests that further research is needed to better understand this condition, the
number of animals involved and the degree to which their welfare is compromised.
2.5.4
Is animal hoarding an offence?
There are currently no specific offences or penalties associated with the term ‘animal hoarding’ in Victorian
legislation, however:
•
The Prevention of Cruelty to Animals Act 1986 contains various sections relating to how animals are to
kept and cared for, for example, Section 9 'Cruelty' and Section 10 'Aggravated Cruelty' specify offences
relating to the care and treatment of animals. Penalties apply for breaches of these sections - such
breaches would occur in many animal hoarding situations.
•
In addition, there are Codes of Practice , created under Section 7 of the Prevention of Cruelty to
Animals Act, specifying how animals should be kept and cared for.
•
Under Section 42, Part 3, Division 4 of the Domestic Animals Act 1994, each municipal council can make
local laws relating to the number of animals which may be kept, these differ from council to council. This
is where (that is, in the local laws, rather than directly in the Domestic Animals Act) penalties could be
applied regarding the number of animals. Refer extract:
38
Division 4—Powers and duties of Councils with respect to the control of dogs and cats
42: Power of Councils to make local laws.
A Council may make a local law for or with respect to all or any of the following (a) regulating the number of dogs or cats which may be kept on premises situated in the municipal
district of the Council.
2.6
Prevalence
While recognised in ancient Greek times and having a clinical history dating back decades, compulsive
39
hoarding has only recently become the subject of empirical inquiry.
It is unclear how widespread compulsive hoarding is, as the problem often only surfaces after a neighbour’s
complaint or a medical emergency. There have been no major epidemiological studies on the prevalence of
compulsive hoarding in its own right.
Compulsive hoarding is today recognised as a public health issue with sufferers experiencing significant co
morbidity and morbidity as well as impaired neuropsychological functioning.
Researchers say that because many people who have a hoarding problem live alone, and don't entertain, it's
40
difficult to estimate how many are affected. Estimates indicate that about 2 million Americans have a
hoarding problem.
In surveying USA public health departments in 2003 it was found that over a five year period 26 complaints of
hoarding per 100,000 people were received. Researchers suggest that this figure seriously underestimates
41
hoarding's prevalence.
Other studies indicate that:
•
Among US college students the prevalence of compulsive hoarding was estimated at roughly two to four
per cent and that less than one in 200 or 0.5 per cent of those with OCD, presented with compulsive
hoarding.
38 There are a range of codes (for example Cat, Dog etc), all of which can be found at : http://www.new.dpi.vic.gov.au/agriculture/about-agriculture/legislation-regulation/codes-of-practice-animal-welfare.
39 From Dante to DSMV: A short history of hoarding Refer: http://www.ocfoundation.org/hoarding/dante_to_dsm-v.aspx
40 Frost, R.O. PhD, Saxena, S. MD, 1Professor of psychology at Smith College, Northampton, Mass.,USA., 2Associate Professor of psychiatry, University of California San Diego, School of Medicine, La Jolla.
41 Steketee G, Frost R. Compulsive hoarding: current status of the research. Clin Psychol Rev.;23:905-927. 2003.
Page 11 of 131
•
OCD has a lifetime prevalence of one to two per cent of the population and around 25 – 30 per cent of
42
people with OCD are clinical compulsive hoarders and in twice as many males as females. This
estimate is thought to be conservative and is much higher, possibly nearer five per cent.
•
Two to three per cent of the USA population (seven to eight million) has OCD and up to a third of those
43
exhibit hoarding behaviour.
•
A recent German population-based study explored the prevalence rate of compulsive hoarding and its
44
association with compulsive buying in a nationally representative sample of (N = 2307).
•
In this study compulsive hoarding was assessed using the German version of the Saving Inventory45
Revised. Individuals with compulsive hoarding did not differ significantly from those without compulsive
hoarding with regard to age, gender and other socio demographic characteristics.
•
Significant correlations were found between compulsive hoarding and compulsive buying measures.
Participants with compulsive hoarding reported a higher propensity to compulsive buying than
respondents without hoarding. About two thirds of participants classified as having compulsive hoarding
were also defined as suffering from compulsive buying.
•
An Australian Study (Victoria) indicated that 10 to 20 per cent of all OCD patients have compulsive
46
hoarding as their primary diagnosis and 42 per cent as a secondary symptom.
•
Symptoms of clutter and difficulty with discarding occur earlier than active acquisition of items.
•
Compulsive hoarders often have a first degree relative who hoards. Further evidence for genetic factors
has emerged from the OCD Collaborative Genetic Study, which showed a significant linkage to
compulsive hoarding on chromosome 14 in families with OCD where there were two or more hoarding
48
relatives. In families with fewer than two hoarding relatives there was a suggestive link on chromosome 3.
47
Co morbidity49
Co morbidity is common, with 92 per cent having one additional psychiatric diagnosis (Table 2). Those who
compulsively hoard have significantly more co morbidity than those with non hoarding OCD, with females
having greater co morbidity than males.
Table 2: Most common co morbidity in OCD hoarding
• Major depression
• Bipolar disorder
• Substance abuse
• Panic disorder
• Generalised anxiety disorder
• Social phobia
Compulsive buying, pathological gambling also commonly co-occur with compulsive hoarding. Personality
disorders are also common, particularly OCD (dependent and avoidant).
Non-OCD hoarding
Compulsive hoarding occurs in illnesses unrelated to OCD, may be a feature of an impulse control disorder
or the result of a stereotypical ritualistic behaviour.
Table 3: Compulsive hoarding in illness unrelated to OCD
• Prader-Willi syndrome
• Attention deficit disorder
• Anorexia nervosa
• Depression
• Mental retardation
• Brain damage
• Autism
• Tourette syndrome
• Schizophrenia
50
• Dementia (studies suggest up to 23% of those with dementia compulsively hoard).
42 Saxena S, University of California.
43 Frost R.O., Professor of psychology Smith College in Northampton, Mass., USA.
44 Mueller A, Mitchell JE, Crosby RD, Glaesmer H, de Zwaan M. Behaviour Research and Therapy, 42, 1163-1182. Aug;47(8):705-9. Epub 2009 May 4. Department of Psychosomatic Medicine and Psychotherapy,
University Hospital of Erlangen, Germany. [email protected] . 2009.
45 SI-R; Frost, R.O., Steketee, G., & Grisham, J. 2004.
46 Jeffreys, D., Moore. K.A., School of Psychology, Deakin University, Victoria. Pathological hoarding, Clinical Practice. Reprinted from Australian Family Physician Vol. 37, No. 4, April, 2008.
47 Samuels J, Bienvenu OJ, Riddle MA, et al. Hoarding in obsessive compulsive disorder: results from a case-control study. Behav Res Ther;40:517–28. 2002.
48 Mathews CA, Nievergelt CM, Azzam A, et al. Heritability and clinical features of multigenerational families with obsessive-compulsive disorder and hoarding. Am J Med Genet B Neuropsychiatric Genet;144:174–82.
2007.
49 Jefferys D., Moore K.A., School of Psychology, Deakin University, Victoria. Pathological hoarding clinical practice Reprinted from Australian Family Physician Vol. 37, No. 4, April 2008
50 Hwang JP, Tsai SJ, Yang CH, Liu KM, Lirng JF. Hoarding behaviour in dementia. A preliminary report. Am J Geriatric Psychiatry;6:285–9. 1998.
Page 12 of 131
2.7
Age of onset
Hoarding is more prevalent in older than younger age groups. Initial onset of hoarding symptoms is believed
to occur in childhood or adolescence with a chronic and progressive course throughout the lifespan.
There is little evidence for late onset hoarding. Hoarding severity increases with each decade of life, thus
older adults experience very serious levels of hoarding. This increase in hoarding symptoms is particularly
interesting given findings of decreasing prevalence of other psychiatric disorders in late life. Other than
dementia, hoarding may be the only psychiatric disorder that actually increases in severity and prevalence
throughout the life course.
The onset of compulsive hoarding behaviour has only started to be defined over the past 15 years, so there
is very little known and suggested ages therefore varies. While childhood and adolescence is the norm for
51
onset of symptoms, most people only recognise they are compulsive hoarders in adulthood.
Studies indicate hoarding behaviours can start as young as 10 years of age, becoming disruptive around 17
52
and unmanageable by the mid thirties. The accumulation of objects doesn’t impact to a fuller extent until
53
the person is in their 40’s or 50’s and frequently much later.
Information to date suggests that people are more likely to seek help when they are over 50 years of age.
2.7.1 Older people who hoard
Historically, compulsive hoarding behaviours of older people were discussed in terms of Diogenes syndrome
and domestic squalor with syllogomania (that is, unnecessary or out-of-control collecting and hoarding of
54
possessions) a common symptom.
Today, the validity of Diogenes syndrome is disputed due to overlapping symptoms of OCD, other psychiatric
illnesses and dementia.
Most elderly hoarders are women who have never married, with 92% having clutter without apparent
organisation. Pertinently, most hoarders who are elderly consider their hoarding a physical health threat but
55
do not consider themselves cognitively impaired.
An older person who recently sought treatment for their hoarding behaviour was able to recall identifying with
hoarding when they were 6 years old.
Hoarding behaviours have been associated with the severity of dementia. Hoarding and hiding behaviours
are commonly reported in nursing home patients with dementia; however it is not clear whether this
behaviour is a manifestation of dementia or a prior history of hoarding.
There is limited research on hoarding in older adults with the majority of published articles on isolated case
reports or in dementia samples. Nevertheless, it is well known that late life hoarding is a serious psychiatric
56
and community problem that warrants considerable attention.
51 Grisham JR, Frost RO, Steketee G, Kim HJ, Hood S. Age of onset of compulsive hoarding. J Anxiety Disord;20:675–86. 2006.
52 Mogan C., Melbourne based Clinical Psychologist. Extract: Working with People with Hoarding Behaviours DVD. Copyright Vision Australia. Pub 2010.
53 Macfarlene S., Director Caulfield Aged Psychiatry Service, Caulfield Hospital. Melbourne. Australia. Extract: Working with People with Hoarding Behaviours DVD. Pub 2010. Copyright Vision Australia 2010.
54 Clark AN, Mankikar GD, Gray I. Diogenes syndrome. A clinical study of gross neglect in old age. Lancet;15:366–8. 1975.
55 Steketee G, Frost RO, Kim HJ. Hoarding by elderly people. Health Soc Work;26:3:176–84. 2001.
56 Catherine R. Ayers, Ph.D., ABPP. International OCD Foundation
Page 13 of 131
3
Domestic squalor
Cleanliness varies between homes and between individuals and can be presumed to be influenced by
multiple factors including upbringing, peer and family expectations, living arrangements, social and financial
circumstances, cultural background and surroundings.
However some people live in conditions so filthy and unhygienic that almost all observers, in whatever
culture, would consider them unacceptable.
3.1
Research
No studies have looked at the benefits of providing targeted support to people living in squalor.
57
58
A recent literature review involving over 1100 identified cases of severe squalor indicated that half of those
described as living in severe squalor were elderly, with often poor intervention outcomes. The study indicated
that people living in severe squalor were most commonly diagnosed as having dementia, alcoholism or
schizophrenia, though personality problems were evident in a high proportion.
The review revealed a second body of literature indicating that accumulation of rubbish was described in over
half of the case reports on severe domestic squalor, but suggested this should only be called hoarding if it
results from the purposeful collection of items.
This study concluded there was need for further studies with the aim of using standardised ratings of living
conditions, investigating and trying to understand the complex interplay of triggers and vulnerabilities,
exploring how best to intervene and examining the outcomes of interventions.
3.2
Defining domestic squalor
Australian context
59
The term domestic squalor is specific to the Australian experience and is used to describe living conditions,
not people. A squalid dwelling or living place (as opposed to clothing or appearance) refers to somewhere
that is filthy, unclean or foul indicating extreme self neglect through a lack of care, cleanliness or general
neglect.
The confrontation is in relation to domestic environments rather than to the people living there, though often
the associated but unspoken thought is, ‘How could people live like that? How have they allowed their living
conditions to deteriorate in that way?’
60
There is some research discussion around defining wet squalor from dry squalor though it seems there is
not a clear-cut division between the two. When people hoard animals as well as other stuff, the resultant
squalor can be described as a mixture of wet and dry.
There is a range of squalor situations. Some people live in filthy homes without a lot of clutter. Some live in
very cluttered dwellings that can not be cleaned because of the clutter.
Whether someone lives in ‘squalor’ is subjective and often influenced by the attitude, exposure to the unclean
environment and personal living conditions of the person making the assessment. There have been attempts
to define:
Poor living conditions: an appropriate and sensitive term for most unpleasant domestic situation covering
a range of health conditions and domestic circumstances, and
Severe domestic squalor: which suggests more extreme conditions.
Importantly neither living condition is defined by financial means, employment status nor a person’s standing
61
in the community.
57 McDermott S, Shifting through the evidence: Results from an Empirical Study of Domestic Squalor in Sydney. Pathway through the Maze. National Squalor Conference. 2009.
58 Snowdon, et al, 2006.
59 Halliday et al, 2000.
60 Halliday, G.
61 Snowdon J, 2005.
Page 14 of 131
62
Both conditions overlap in different ways with other concepts such as senile squalor, OCD
64
65
syndrome and social withdrawal.
63
and Diogenes
In the USA and the UK situations of squalor are often called self neglect and can be classified as a type of
66
elder abuse. In Australia, self neglect or squalor are not included as a form of elder abuse, when elder
67 68
abuse is defined as occurring within a relationship of trust.
In no cases in Australia can an older person be removed from their home against their wishes without first
69
gaining a legal ruling that they are not capable of making decisions about their personal affairs.
It is argued that some squalor situations can be addressed through the use of legislation (e.g. a state or
territory mental health or public health act), however these acts are not directly applicable to all squalor
circumstances.
70
The National Squalor Conference (Sydney) 2009 emphasised the need to come to terms with severe
domestic squalor, proposing that such cases were not living in states of ‘moral degradation’ - there should be
no judgements about morals nor degradation. The conference proposed that poverty should not appear in a
definition, even if the latter is sometimes a factor to consider.
The conference impressed the need for governments and others in general to take action and responsibility
for such cases where living conditions are unacceptably unclean, unsafe and/or unhygienic and that have
unacceptably deleterious effects on the people living there or nearby.
3.3
Factors contributing to severe domestic squalor
Severe domestic squalor can occur in a number of circumstances and situations affecting a range of
household types and age groups, both younger and older people, as well as couples.
Some environments such as those that are cluttered and inaccessible, may be more likely to be labelled as
‘squalid’ even though they may be no dirtier than other places where there is less property and
71
possessions.
It is likely that those who live in severe domestic squalor start doing so because of a complex interplay of
triggers, vulnerabilities and circumstances such as:
•
Obsessive compulsions and indecisiveness
•
An accumulation of refuse and useless items is attributable to apathy and impaired executive function
resulting from brain disease or mental disorder
•
Lack of impulse control could contribute
•
Limited but growing evidence that frontal lobe dysfunction may be a major factor.
•
Associated factors including domestic violence, economic and cultural poverty, diverse cultural values
and beliefs, war or other trauma.
•
Evidence suggesting that half to two-thirds of all persons living in severe domestic squalor may also have
dementia or alcohol-related brain damage or mental health issues such as schizophrenia and
depression.
72
The person’s behaviour is more often due to other problems like drug addiction or the loss of cognitive
function so they may not be able to make judgements and therefore might eat rotting food. This type of
squalor is usually associated with foul smells, a sense of decay and rotting floor boards.
62 Shah, 1991.
63 Winsberg, Cassic and Lindesay, 1999.
64 McDermott, S., Gleeson, R., Evaluation of the Severe Domestic Squalor Project: Final Report; Catholic Healthcare, Social Policy Research Centre, University of New South Wales. 2009.
65 Sheehan and Geddes, 1998.
66 McDermott, 2008.
67 Hailstones, 1992; Kurrle and Sadler, 1994.
68 Victorian Government, Department of Human Services, With respect to age – 2009. Practice guide for health services and community agencies to prevent elder abuse. 2009.
69 Bennett and Hallen, Shah 1995b. 2005.
70 Snowdon J., Pathways through the Maze: National Squalor Conference. November, 2009.
71 Adapted from published criteria: Macmillan D, Shaw P. Senile breakdown in standards of personal and environmental cleanliness. BMJ 1966:I:1032- 37. Clark AN, Maniker GD, Gray I. Diogenes syndrome: a clinical
study of gross neglect in old age. Lancet:I: 366-68. 1975.
72 Snowdon J. Explaining Severe Domestic Squalor. Pathway Through the Maze, NSW. National Squalor Conference. 2009.
Page 15 of 131
73
Table 4: Findings from a cross-age study of severe squalor in South London
Findings from a cross-age study of severe squalor (needing heavy-duty cleaning) in South
London
57
(70%) of 81 subjects had an ICD-10 mental disorder
17
(21%) schizophrenia etc. (9% + drug &/or alcohol abuse)
13
(6%) dementia (6% + alcohol abuse)
5
(6%) other organic mental disorder, (all 6% + alcohol abuse)
8
(10%) drug or alcohol abuse but no other mental disorder
5
(6%) anxiety-related disorder
4
(5%) mood disorder
9
(11%) developmental disability (1% + drug abuse, 5% + other mental disorder)
Other 14 anxious-avoidant personality, 5 paranoid/schizoid, 10 conscientious, perfectionist,
houseproud and 1 dissocial.
Studies have shown moderate to high rates of medical problems for people who live in severe domestic
squalor conditions particularly in relation to mobility, continence, sensory impairment (especially visual) and
74
nutritional deficiencies such as diabetes and obesity.
Some other indicators include:
•
persistent self neglect (for example,. exceptionally poor hygiene: soiled clothing; bleeding skin infection;
75
inadequate toileting practices)
•
failure to attend to life functions (for example, defecation in sleep area)
•
poor property maintenance (for example, no clean washing facility; no refrigeration)
•
inadequate living conditions
•
low awareness of consequences to self and others (for example, unbearable stench emanating to all but
the occupant, who is blissfully unconcerned by the situation)
•
hostile attitudes (for example, towards family, friends, authorities)
•
stubborn refusal of help (for example, rubbish removal; intense clean ups).
•
a rationale incongruent with their situation (for example, living with large numbers of uncared for animals
[cats, dogs, birds, rats, mice] who feed and defecate wherever they want)
•
a lack of concern about their living conditions (for example,. excrement and decomposing food are
strewn around the floors; rotting mess).
Environmental and geographical factors such as rubbish disposal methods, housing and urban design,
76
building structures and the availability of local services may also be included.
3.4
Prevalence
Although psychiatric and other community service providers commonly encounter cases where intervention is
needed due to a person’s unclean or cluttered living condition, evidence concerning the referral rate and
prevalence of severe domestic squalor is sparse.
By 2007 the literature on squalor reflected 74 case-reports and 15 reports of case-series in health sciences
journals. The following data provides some indication of prevalence, though are confined to the limitations of
the projects undertaken:
3.4.1 Severe domestic squalor study - Sydney
Research in Australia
77
The first empirical study conducted in 1987, surveyed 83 people who lacked personal and environmental
cleanliness. It was estimated that three to four people out of 1000 live in squalor and suggested that figure
may be higher.
73 Halliday G, Banerjee S, Philpot M, Macdonald A. Lancet 355, 882-886. 2000.
74 Northern Sydney Severe Domestic Squalor Working Party Information Pack August, First Edition. 2005.
75 Public Places – Private issues; helping rough sleepers in squalor. Mission Australia; City of Sydney. National Squalor Conference, Sydney. Nov. 2009.
76 Domestic Squalor Information Package: A guide for services to assist with identifying and dealing with Severe Domestic Squalor in the Blue Mountains. Blue Mountains City Council., Blue Mountains Domestic
Squalor Working Party, June, 2009.
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78
A severe domestic squalor study was undertaken in New South Wales, Central Sydney (Eastern sector).
Cases were referred to an old age psychiatry service in Sydney, where ratings of cleanliness and clutter were
made. Where possible a one-year follow-up was arranged and indicated that:
•
173 persons aged 65+ were assessed as living in squalor of which 120 were moderate or severe.
•
Of the 157 followed up after one year, 47 per cent were still living at home, 32 per cent were in longterm care homes, 12 per cent had moved elsewhere and 9 per cent had died.
•
The annual new referral rate in the catchment area was close to one per 1000 elderly people and for
moderate or severe squalor was 0.66 per 1000.
•
Limited follow-up was provided to those in moderate or severe squalor, 41 per cent were still at home.
Table 5: Health status of presenting cases Central Sydney study
Diagnoses given to people aged 65+ years in Central Sydney,
living in severe or moderate squalor (2000-2008)
Dementia (including FTD* )
ARBD** and/or alcohol abuse
Other drug abuse
Schizophrenia
OCD
Other personality disorder
Depression
Frailty, medical illness (for example, CVA)
Unrecorded or no diagnosis
Total
43
22
2
14
6
5
2
10
9
113
(40%)
(20%)
(13%)
* Front temporal dementia
**Alcohol-Related Birth Defects
Additional considerations from this study were:
•
These cases agreed to be referred as part of this study however the number of non-referred cases can
only be guessed. Some cases were referred but refused to be involved.
•
Because half of those living in moderate or severe squalor were found to be still at home after one year
and others had moved in with relatives, the prevalence of moderate or severe squalor among people
aged 65+ is estimated at 1.5 per 1000.
•
This study did not scope people younger than 65 years of age who might also live in squalor, which
79
discounts a large population cohort when endeavouring to determine prevalence.
Figure 2: Examples of squalid living conditions
77 Snowdon J., University of Sydney. 1987
78 Snowdon J, Discipline of Psychological Medicine, University of Sydney, Concord Hospital, Sydney, Australia and Halliday G., Sydney South West Area Health Service, Concord Hospital, Sydney, Australia. 2000 –
2009.
79 Prevalence/incidence estimates from study: Extract Professor John Snowdon – Explaining severe domestic squalor Sydney conference, 2009.
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4
Interrelationship between hoarding, squalor
and collectionism
Severe domestic squalor can be accompanied by hoarding and the accumulation of consumer items and
80
packaging, however, care needs to be taken not to label every case of hoarding or excessive collecting as
severe domestic squalor. This would not be helpful and could be regarded as insulting to the ‘collector’
concerned.
Some people neglect (seem not to care about) cleanliness of themselves, their dependants or their homes
and don’t get rid of rubbish but this may be due to a broad range of possible other health conditions such as
dementia, schizophrenia, drug addition or alcoholism, to name a few.
Others are physically or cognitively unable to take action to manage their living environment or the
circumstance may encompass a mix of both the above.
4.1
Compulsive hoarding
The literature on hoarding presents various reports, some mentioning squalor, but no research on the
81
prevalence of severe uncleanliness in cases of hoarding.
It has been suggested that compulsive hoarding is really an impulse-control deficit rather than a compulsion
82
and that some hoarders collect ritualistically rather than compulsively or on impulse. Others who hoard
don’t collect, they just don’t throw away.
4.1.1
Models of Hoarding83
Abnormal psychology model is a focused Delusional Disorder (that is, odd and bizarre reasons for keeping
things):
- claiming affinity with animals or special relationship with or need for things
- deny obvious neglect, harm and chaos; hostile, rejecting of help
- function well outside delusional system.
Squalor model
- dementia and other deteriorating models emphasise loss of self-care and organisation
- secretive, isolated, uncooperative; decayed food, animal waste, pest infestation
- hoarder profiles emphasise 65+, single, female
- dementia brings a sudden deterioration to any hoarding situation
- require structure, psychiatric assessment, protective interventions and medication.
Addictive model
- totally pre-occupied with hoarding focus
- denial, excuses, claims of persecution, ignoring overall outcome of hoarding
- impulse control issues in compulsive acquiring of things or animals
- significant co morbidities.
Attachment model
- emphasises disorganised early attachment with compromised chaotic parenting; animal or object as
stable fixtures
- compensatory unconditional love for and from animals has explanatory power
- consistent with compulsive hoarding where sense of self and grief-like loss connected with things
- compulsive need to keep animals or objects to protect them, maintain connectedness.
Obsessive compulsive disorder (OCD) model
- OCD associated with hoarders’ key felt responsibility to care for possessions including things, animals,
memories
- harm prevention, special relationships or other symbolic meanings
- sense of ‘mission’ whether for animals or responsibility for things
- avoidance behaviours can reach delusional levels.
80 Stepney, 1994.
81 Snowdon, Shah, Halliday Internat Psychogeriatrics, 19, 37-51. 2007.
82 Grisham, J., Williams, A.D., Kadib R.,SpringerLinkAbstract, 2011 Hoarding as a Behavioural Addiction ADDICTION MEDICINE, 2011, Part 5, 687-701, DOI: 10.1007/978-1-4419-0338-9_34
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4.2
Squalor
The term squalor is used to describe living conditions, not people. Squalor is the accumulation of objects that
have no meaning, resulting in a mess.
A person living in squalor can at times also display hoarding behaviour with an accumulation of animals,
broken appliances, leaking taps, dysfunctional toilet/laundry and general rubbish throughout the home.
84
Dr. Kiran Rabheru states:
‘The difference is that people with OCD realise their actions are illogical, people who live in squalor
don't…..Squalor is frequently associated with the elderly, but such cases involve adults of all ages and
in all socio economic categories.‘
Management of such cases is difficult as many people in these circumstances have severed ties with family
and friends and mistrust doctors, so don't seek medical care or support generally (refer Appendix 3:
Snapshot and commentary, progressive kitchen cleanup in squalid condition).
4.3
Collectionism
Some people collect ritualistically rather than compulsively or on impulse. Ritualistic collection and
85
unmotivated accumulation of rubbish should not be referred to as hoarding.
Compulsive hoarding can also be differentiated from collecting behaviour, where collectors are proud of their
collection, enjoying and displaying them. The collector’s items are maintained, displayed, organised and
functional, with further items added when budget permits; the home is not cluttered.
In contrast to compulsive hoarding, collecting is purposeful with specific items often acquired and retained in
a way that reflects pride in what they have collected. A compulsive hoarder tends to be more ashamed of
their behaviour and their items are not organised, particularly at terminal stages.
Lack of impulse control may contribute to collecting behaviour, resulting in reduced living space, if there is
also a failure to discard. Some people neglect (seem not to care about) cleanliness of themselves, their
dependants or their homes and don’t get rid of rubbish (for example, some with dementia, schizophrenia,
alcoholism). Some are physically or cognitively unable to take action.
Excessive or inappropriate collecting (and especially failure to discard) may lead to difficulty in cleaning.
86
Table 6: Aspects of collectionism, self-neglect and severe domestic squalor
Collectionism
Self neglect and severe
domestic squalor
•
Organised and systematic
collecting
•
Neglect personal care and home
cleanliness
•
Compulsive acquisition with
little attempt to resist (items
may be of value, collected
systematically but to excess)
•
Neglect basic health needs
(including medication)
•
Poor care of finances
•
Fail to eat/drink enough
•
Neglect social needs
•
Fail to protect self from financial
or sexual abuse
•
Hoarding (acquisition of, and
failure to discard possessions
of limited use or value)
•
Accumulation of rubbish
84 Rabheru, K., Extreme squalor presents a therapeutic challenge American Association for Geriatric Psychiatry. Clinical Psychiatry News, May, 2003 by Norra MacReady , May 2003
85 Maier, 2004.
86 Snowdon J: Explaining Severe Domestic Squalor: Pathways through the Maze, National Squalor Conference, Sydney. NSW. 2009.
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5
Managing risk
The compulsive hoarder’s home may pose risks for fire, falling, poor sanitation and other health risks. As a
democratic society, nobody can impose a standard of living onto other people but there needs to be
maintenance of common standards to ensure that no harm is caused, and living conditions are safe and
healthy for the person/s concerned and the neighbourhood.
Well-meaning family members and/or professionals who try to help by sorting and purging the clutter on the
hoarder's behalf are likely to find their good deed has an unanticipated result, that is, an increased effort on
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the part of the hoarder to protect their stuff from ‘unauthorised touching’.
5.1
Safety and security for people who hoard and/or live in squalor
Hoarding or living in squalor can lead to a wide range of serious problems, particularly as the condition
worsens, keeping in mind hoarding characteristics refer Section 2.4.
5.1.1 Susceptibility to poor health and illness
People living in hoarding and/or squalid conditions are more susceptible to poor health and illness, for
example:
5.1.2 Vulnerable people
People who hoard and/or live in squalor and are older, disabled or who have a mental health condition are at
greater risk due to a broad range of health conditions and related consequences, including reduced mobility.
They may or may not live alone and/or have supportive neighbours, but they certainly face challenges that
could be life-threatening, for instance:
•
trying to walk inside a cluttered home or outside in a cluttered yard, is a challenge for anyone young or
old but manoeuvring around accumulated possessions that threaten safety (for example, hazardous
material poorly stacked/stored, excessive dust and disintegrating debris, blocked pathways, risk of
falling/tripping ) and that don’t permit routine care activities (that is, a functioning kitchen, a place to eat
meals, access to a shower or bathtub)
•
easily losing keys, money and important papers such as bills, wills, mobile phones
•
misplacing medications and/or keeping old expired medicines that are no longer safe to use, refusing to
discard the drug believing it would be wasteful
•
risking illness or even death if old medicines are taken along with currently prescribed and/or over the
counter medications - certain drugs should never be combined
•
reduced vision and hearing as well as difficulty moving about, would enhance the possibility of falls and
serious injury
•
delayed access by emergency personnel in order to find/reach them; clutter/muck causes further delay if
88
the person has to be carried out on a stretcher
•
the neglect or abuse of children where they are being brought up either by parents or grandparents in a
hoarding/squalor environment and exposed to multiple risks.
5.1.3 Impact of animal neglect on the environment
Taken to its inevitable conclusion, animal hoarding results in considerable animal suffering from neglect.
In worst-case scenarios the impact on the environment of large numbers of starving and maltreated animals
due to hoarding, creates squalor conditions and contributes to:
•
the home being damaged from accumulated faeces and urine, fur, infestation and sleeping habits of
large numbers of animals – may result in the home being condemned as unfit for human habitation
•
frail adults with health challenges who hoard animals, usually can not keep up with cleaning demands
•
a person’s health is affected when animal droppings dry and turn to dust, the particles can be inhaled
causing lung and respiratory health concerns, bacteria spreads and there is limited infection control.
87 Frost, Hartl, Christian and Williams, 1995.
88 Read more at Suite101: Elderly Compulsive Hoarding Means Extra Worries for Caregivers http://www.suite101.com/content/elderly-compulsive-hoarding-means-extra-worries-for-caregivers-a255671#ixzz1CahPVPsL
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5.1.4 Neighbours, building and property
Although neighbours do not live in hoarding and squalor homes or properties, they are at risk of the
environment that hoarding and squalor creates, often initiating complaints to local Councils with regard to that
property and its effect on the amenity of the neighbourhood. It may depend on what is visible inside/outside
the house and/or what can be smelt. No matter what the circumstance, the following concerns may apply:
•
public health problems (for example, spread of pest infestation to adjacent apartments and homes)
•
structural problems due to too many heavy items (for example, boxes, machinery parts) for building load
limits
•
flooding when pipes are in need of repair
•
fire from electrical wiring or heating systems in need of repair
•
the house being condemned due to unsafe or unclean conditions, such as:
- walls deteriorating with age and rotting/collapsing due to piles of belongings shoved against them
- floors rotted with age under piles of garbage and belongings
•
lost property value and rental income for landlords who must make costly repairs due to hoarding/squalor
or who have to pay legal fees (for example, to end a tenant’s lease)
•
if a house or property is perceived to be a fire risk or indeed disintegrates to the point of being
condemnable, the appropriate authorities would need to be involved to minimise harm.
5.2
Fire
The Melbourne Metropolitan Fire and Emergency Services Board (MFB) and the Country Fire Authority
(CFA) both say that hoarding/squalor houses or properties increase risk and danger for the occupant, their
neighbours, firefighters and service providers.
MFB suggest that every fire associated with hoarding and/or squalor that they attend is completely different
to each other due to diversity of the persons age, socio economic and geographic spread, diverse family
group structures, single person households and housing types.
Both MFB and CFA respond to hoarding fires in Victoria which they say involve people of all ages, but
suggest the fire risk for people who hoard is acute and generally increases for people aged 65 years and
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over.
Hoarding increases the risk of fire due to:
•
accumulated possessions resulting in an abnormally high fuel load with greater ignition opportunity
•
blocked exits and narrow internal pathways impeding escape for the occupant and firefighter access
•
non functional gas or electricity may result in unsafe practices for cooking and heating
•
poorly connected, disconnected and/or improvised utilities (e.g. running clean water, heat, refrigeration
and sewerage).
90
Research involving MFB has identified that people aged 50 years+ who hoard, are at particular risk and
91
accounted for 24 per cent of all preventable fire deaths between 1999 and 2009. The study suggests that
older people and people with disabilities were found to have been at a greater risk of fire fatality (refer
Appendix16: MFB and CFA research studies).
5.2.1 Risks for firefighters
Firefighters face tremendous risk when responding to hoarding fires, often not knowing what they are dealing
with until trying to enter the burning building. When firefighters go into an unknown environment it is always
dangerous. Hoarding fires make it even more so due to accumulated items often stacked:
•
from floor to ceiling, metres deep, unstable and at risk of caving in and falling over
•
in rooms and along walls, hallways and around entrances restricting movement of operational firefighters
in full turn out gear and breathing apparatus.
89 Harris J. Community Ageing Specialist, Metropolitan Fire and Emergency Services Board, Melbourne, Victoria. Working with people with hoarding behaviours DVD. Copyright Vision Australia 2010.
90 Aufiero, M., Carlone, T., Hawkins, W., Murdy, S. Analysis of Preventable Fire Fatalities of Older People and People with Disabilities:
Risk Reduction Advice for the Community Care Sector. An Interactive Qualifying
Project Report submitted to the Faculty of Worcester Polytechnic Institute in partial fulfilment of the requirements for the Degree of Bachelor of Science (May 2011).
91 Refer MFB webpage:http://www.mfb.vic.gov.au/Community-Safety/Home-Fire-Safety/Hoarding-a-lethal-fire-risk.html
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Stacked and accumulated items significantly impact on search and rescue operations and increase the risk of
firefighters performing these duties. Often the only way firefighters can get into a building filled with hoarded
material is to smash the walls down from the outside, only to find another wall of tightly packaged hoarded
material up to the roofline.
Firefighters have to hack their way through and over compacted hoarded material to somehow find the fire
source. This is particularly difficult in multi storey homes if trying to find a stairway which is often hidden/ lost
in the collected clutter.
Excessive use of extension leads (often poor quality) supplementing power access from one side of the
house to the other contributes to fire risk particularly when live wires are left lying carelessly around.
MFB say that many people who hoard are aware of this danger so will not use heating or warming amenities
due to fear of starting a fire. They may however make do with makeshift and exposed and unsafe wiring,
leaving half/or the whole house without any power, as well as using candles. Old kerosene heaters often in
poor condition are also used for heating and/or cooking.
At times extraordinary methods are used to heat and cook (for example, a makeshift pizza oven built out of
bricks or old oven pieces, in the middle of a lounge room on the carpet – surrounded by clutter and hoarded
items).
Figure 3: Examples of electrical fire risk
A fire crew member from the Phoenix Fire Department, USA who battled a recent hoarding blaze which
destroyed a home, described his experience:
‘Going in he had a feeling it wasn't going to stay 'first-alarm” for very long. As he prepared to break through the
front of the house, he saw stacks of boxes both inside and outside the main entryway. He was putting his mask on
when an explosion rocked the home, forcing him to dodge smoking debris and rocks.
‘I've never been shot with a shotgun, but it felt like getting pelted with a bunch of rocks…on the side of your head,’
he said. The explosion blew apart the east and west walls of the home, making it a total loss.
Firefighters attributed the explosion to the amount of combustible material found in the backyard as well as inside
the home. The crew member suffered second-degree burns on his face, ear and hand.
The residents of this home had a furniture-building business and were selling items from their house. The
backyard and inside rooms had been packed with furniture after the residents could no longer afford to store it.’
The deputy chief of public affairs for the Phoenix Fire Department said he remembers a hoarding incident
where a four-bedroom home and garage was packed floor to ceiling with newspapers, textiles and other
materials. Inside, one part of the ceiling had been ripped off and exposed to add more room, enough to chain
a fibreglass boat to the rafters.
In such cases, firefighters could easily come across flammable liquids, plastics and other dangerous
92
materials without realising it. Firefighters often find extreme hoarding conditions during medical calls.
92 Refer: http://www.azcentral.com/community/tempe/articles/2011/03/24/20110324hoarding-safety-hazard-firefighters.html#ixzz1MfR6efDK
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5.3
The legal system
Some people who hoard are motivated to seek treatment on their own; others are pressured to seek
treatment by court order after inspections from agencies such as fire and public health departments or a
housing authority.
Due to the nature of hoarding behaviour, people who hoard may fail to recognise the dangers of hoarding. It
is not surprising then, that those who hoard may not feel motivated to change the conditions in the home.
However, as the severity of hoarding increases, sometimes others must act to prevent harm; they can turn to
the legal system for support.
The following are some situations in which the legal system becomes involved in cases of hoarding.
•
a landlord may petition the court to evict a tenant when excessive possessions or unsanitary conditions
violate a lease
•
protective service workers may seek guardianship of children, disabled or older adults when they
determine that hoarding constitutes abuse or neglect of these individuals
•
members of the public health or fire departments may appear before a judge for a court order to bring a
property in compliance with health and safety codes or, in extreme cases, to condemn the property
•
animal welfare workers may petition the court to remove abused or neglected animals from their owner.
Standard legal interventions in cases of hoarding often involve sanctions, such as evicting the individual,
mandating a clean out, or removing vulnerable individuals from the home. When this happens without other
interventions, the underlying disorder is not addressed and recidivism is typically high.
A growing number of judges and lawyers are becoming aware that the legal system can play a key role in
effecting enduring change in hoarding cases with appropriate interventions that reflect understanding of
hoarding as a social and personal problem, respect for the rights of individuals and protection of those who
are affected.
Officers of the court often work together with social service providers and others to implement a more
sophisticated approach that coordinates both pressure on the individual to change and support in making
necessary changes. A key part of this process is creating an explicit plan that clarifies necessary changes in
the home and establishes a time-line to reach mandated benchmarks. For those who decline treatments but
93
fail to make progress, judges can mandate treatment or other human service intervention.
5.4
Eviction and homelessness
Housing support services will become aware of hoarding situations through a landlord, a housing provider or
a health service usually when there is risk of eviction, or the real estate agent has come to the conclusion
that the property is not being kept in line with the Residential Tenancies Act.
There may be an accident, medical or health issue where the property environment might be identified as
causing or contributing to the risk, which means a health service contacts public housing who aims to
94
address the hoarding situation.
5.5
Economic and social burden
It is relatively easy to spot the home of a hoarder. What is less visible is the financial wreckage committed by
the estimated 600,000 to 1.2 million hoarders (USA). Their compulsive, incessant acquiring behaviour can
95
leave bank accounts as empty as their homes are full.
How hoarding leads to money problems
The financial impact of hoarding is often most distressing. About 75 per cent of people with hoarding
problems buy excessively, with over half qualifying for a diagnosis of compulsive buying. They tend to have
lots of credit cards creating huge credit card debt. Power and gas may be disconnected, homes fall into
96
disrepair, primary assets slowly unravel and deplete.
93 Cristina Sorrentino Schmalisch, PhD, LICSW International OCD Foundation (IOCDF) - Hoarding Centre. International OCD Foundation. PO Box 961029, Boston, MA. USA. 2010
94 Nancarrow J., Housing Support for the Aged, Loddon Mallee Housing Services, Victoria. Working with people with hoarding behaviours DVD. Copyright Vision Australia 2010.
95 Frost. R.,author of "Stuff:Compulsive Hoarding and the Meaning of Things".
96 Tompkins, M. A., author of "Digging Out: Helping your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring
Page 23 of 131
To worsen matters, hoarders typically have great difficulty organising their possessions, especially
paperwork. The volume of clutter and disorganisation means they can not find bills, receipts or cheque books
when they need them. Consequently, bills don't get paid on time, pay cheques get lost, receipts necessary
for reimbursements never get found. Hoarders also tend to rent storage space to house excess items,
depleting income even further.
A compulsive hoarder may also find it difficult to get or keep a home insurance policy due to heightened fire
and injury risk, consequently seen as too high a risk to insure by some home insurance companies
Friends and family members affected
Hoarder's may reach a point where basic household bills have run into debt and are unable to be paid with
the burden falling onto friends and family, particularly when it becomes apparent that amenities such as gas,
water and electricity are cut off.
These circumstance place both morale and fiscal pressure on family and friends, presenting a circumstance
requiring a response to either finding a way to pay the outstanding (often recurring) debts themselves or
dealing with the fact that their relative/friend might be evicted and then live where? Should/can they take
some kind of responsibility for their relative? The lifestyle of the person who hoards may become the
emotional and ethical concern or responsibility of family member/s and/or friends.
In addition, should tragedy occur for the hoarder such as ongoing depression or suicide, the family are left
97
dealing with not just the emotional fallout but their relative’s liabilities and a house bursting with things.
5.6
Media interest
Hoarding cases and/or squalid environments (including animal hoarding) often and seemingly increasingly,
attracts the attention of the print (dailies and local) and electronic media, particularly television.
Media exposure of such cases may raise awareness and possibly encourage action by individuals and/or
their families, but equally the situation could be sensationalised and presented as an intrusion into the private
and emotional lives of people and their families.
Governments are frequently involved in responding to media claims, particularly when cases involve clients
involved with Housing, Child Protection, Disability and Mental Health services, where senior Victorians are
involved as well as if there is a public or environmental health concern.
97 Tolin, D.F., Frost, R.O., Steketee, G., Gray, K.D., & Fitch, K.E. (2008). The economic and social burden of compulsive hoarding. Psychiatry Research, 160, 200-211.
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6
Effective intervention
A home can contain a great deal of clutter and still not pose any problem for the person living there. Clutter
per se, is not the problem - only clutter that causes distress, impairment or is unsafe to the occupant/s or
immediate neighbourhood requires intervention. Where does service response begin?
This section primarily discusses intervention with regard to compulsive hoarding cases, including when
squalor is involved.
There may well be similarities between compulsive hoarding and squalor interventions, however cases
involving squalor are quite different (refer sections 3 and 4) so interventions achieve different outcomes for
these people. In instances where someone has, for example, self neglect resulting from a dementing illness
the kind of interventions would be very different to treatments offered to a person with OCD or with a
compulsive hoarding condition. Further work on squalor interventions would be undertaken, should a broad
service response framework to such cases be developed.
6.1
What doesn’t work well?
6.1.1 No, to ‘a quick fix’
The key message from all stakeholders (international/national and Victoria) no matter which sector, with
regard to effective intervention be it for a case involving compulsive hoarding or a squalid environment is that
trying to treat the situation through a quick fix, that is an enforced one off physical cleanup, has proven to be
98
ineffective and is discouraged for the following reasons:
•
it will severely impact on the person living there, in most cases causing extreme anxiety and trauma as
the cleanup was not willingly done or enforced by the person with the hoarding behaviour
•
the home will return to its original state very quickly, filled to the brim with newly collected items
•
it does not deal with the psychological disorder which is of course, the cause of the resulting behaviour to
hoard.
Trying to remove evidence of the psychological disorder does not bring about change, health (including
mental health) and community services need to work with the person concerned to ensure sustained gradual
change.
Many people who have experienced a quick fix have had terrible reactions such as severe depression and in
some cases suicide. In some USA states or counties, quick fixes as a compulsive hoarding intervention have
been banned for those reasons.
6.1.2 Psychological or medical treatments
Hoarding, either alone or in the presence of OCD, usually does not respond well to medical or psychological
treatments. Most studies have found that only a third of people who hoard show an adequate response to
99
treatments involving medications.
The treating of hoarding is complex due to the following factors:
•
•
•
•
•
Hoarders have highly-personalised reasons for hoarding.
Hoarders have ambivalent and avoidant personality styles.
Their uncertainty about self and others leads to object-driven compensatory behaviour.
Treatment needs to accommodate interfering variables (for example, rigidity, control, reluctance for
treatment).
100
Fear of making decisions, control and memory and deep-seated beliefs held by hoarders.
Treatment of hoarding requires:
•
•
assessment of hoarders in their context to determine broad and specific treatment goals
liaison with health and welfare agencies – hoarding complexities require collaboration
98 Mogan C., Working with people with hoarding behaviours, DVD. A learning resource containing practical strategies designed to assist Victorian Home and Community Care (HACC) staff working in this area.
Copyright Vision Australia, 2010.
99 Kelly O., Getting Through Hoarding Treatment is Difficult, but New Therapies Offer Hope, About.com Guide. Updated August 22, 2010.
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•
therapy is not a quick-fix, the outcomes are based on specifying goals, and the focus is on harm
minimisation (similar to treatments for drug addiction).
The myths of saving need challenging
A hoarder maintains a range of beliefs and thoughts, a mythology which an effective treatment program
challenges, for example:
•
•
•
•
•
•
•
•
Someone will find this useful.
I never throw anything away.
I must keep all things that recall this person.
I know exactly where everything is.
How helpful to me is this clutter and mess?
These things are my life…I don’t know why!
Throwing things away is rejecting them.
Keeping a thing is to accept it into my life.
101
Dr Mogan suggests that a hoarder’s obsessive focus on things needs to shift to skills about relating with
others. The person over-values hoarding which is underpinned by experiential avoidance, that is possessions are seen as basic to their sense of identity and safety. He suggests better management of
emotions is also needed as this is the key to relationships and problem-solving. The fusion of self and objects
brings resistance and lack of insight in the hoarder.
From an OCD perspective hoarding has been notoriously difficult to treat. Both clinical trials and case reports
show that hoarding does not respond well to selective drug uptake or to psychotherapies that alleviate other
OCD symptoms. On average from the time OCD begins, it may take 14 -17 years for a person to get the right
treatment..
Efforts to treat hoarding behaviours with traditional cognitive-behaviour therapy (CBT) are also often
102
ineffective, however a CBT hoarding protocol
has been developed that shows considerable promise.
•
Treatment is delivered in a group format, focusing on compulsive acquisition, difficulty in discarding
clutter and disorganisation.
•
In the group, compulsive hoarders have their thoughts and emotions that sustain these behaviours
identified and there validity challenged. Exposure and response prevention techniques are applied. (e.g.
group participants go on shopping excursions without buying anything, or they discard objects both in the
group setting and as homework). They also learn methods for organising their belongings.
•
Preliminary results are promising. Participants treated in this manner begin to tolerate the anxiety
associated with discarding objects and gradually reduce the clutter in their homes. Research into
combining this treatment protocol with different combinations of medication is ongoing.
Although the CBT program was developed for people who hoard as a symptom of OCD, some of its tactics
can be applied to the treatment of hoarding in brain-injured patients and patients with Alzheimer disease,
front temporal dementia and other neurodegenerative diseases. In short, effective treatment for hoarding
behaviours is still being developed.
6.1.3 Inhibitors to clinical and practical intervention
Even with the best coordinated service coordination plans and available resources, there can still be a myriad
of blockages to progress, many stemming from the behaviour of the person concerned or their family
members. Some inhibitors include:
•
Hiding symptoms: Some people choose to hide their symptoms, often in fear of embarrassment or
stigma. This causes many people to not seek the assistance of a mental health professional until many
years after the onset of symptoms.
•
Less public awareness of OCD: Until recently, many people did not know there was even a name for
their illness and with no name; they assumed there was no treatment.
•
Lack of proper training in health professionals: People with hoarding behaviours often experience
incorrect diagnosis from health professionals, maybe seeing several doctors and taking several years
before getting the right diagnosis.
102 Frost RO, Steketee G, Greene KAI. Cognitive and behavioral treatment of compulsive hoarding. Brief Treat Crisis Interven.3:323-337. 2003.
Page 26 of 131
•
Difficulty finding local professionals who may be able to assist.
•
Cost - not being able to afford psychological or other treatment.
•
Insight into the severity of symptoms and necessity for change is essential to the success of any form of
treatment. When people do not have insight into their illness, they are much more likely to either not seek
support in the first instance, stop taking medication or to drop out of treatment.
Research has shown that people who hoard often have worse insight into their symptoms than people with
OCD who do not hoard.
Often, people who hoard only agree to commence treatment after being threatened with eviction or some
other negative consequence that is secondary to those caused by their hoarding.
This lack of insight can also be frustrating for family members and may drive them away, feeling their loved
103
one has become delusional and consequently they do not know what to do.
6.2
What does work well?
Compulsive hoarding cases are very difficult to work with, even utilising the most appropriate strategies,
interventions may only achieve limited outcomes.
Generically agreed intervention aims to support people with compulsive hoarding behaviours to successfully
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‘reduce, recycle and reuse’ (the three R’s).
Stakeholders (that is, the person, neighbours and service providers) often have different views about what
should happen, and agreement must be reached prior to intervention commencing.
Understanding the individual when considering whether and how to arrange intervention is essential.
Some may be pleased to receive service support, they may be friendly and may show insight, others not so.
The various factors that may have led a person to live with hoarding behaviours and/or in squalor need to be
105
identified before intervention starts.
It is essential to take into account who or which organisation/s have a good relationship with the person
concerned, as that relationship may need to be fostered and maintained over a long period of time.
Intervention Plans for cases involving hoarding and/or squalor require collaborative planning (refer Section
8.2).
The following points are not that different from already established intervention models, however additional
considerations need to be taken into account due to the nature and health status of people living in hoarding
and squalor conditions.
6.2.1 Intervention principles
Models of intervention that aim to achieve sustained change need to establish collaborative engagement with
the person concerned to be able to move forward, rather than for example, have a doctor step in to provide a
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decision about what course of action is best. The following guiding principles are suggested:
•
treat the person with respect
•
treat each case and each person, individually
•
commence engagement to minimise surrounding harm
•
develop a means to minimise identified suspected or actual harm
•
work with the person/s concerned to bring about sustainable change
•
move the person to different levels of improvement, but do this at their own pace
•
work in a collaborative way, with an agreed action plan, to clean the property in the passage of time
•
do not to touch or move the person’s belongings without permission, based on the understanding that the
107
client sees these items as an extension of themselves
103 International OCD Foundation: http://ocd.about.com/od/treatment/a/Hoarding-Treatment.htm
104 Gaston, R. L., et al, 2009.
105 Snowdon, J., National Squalor Conference 2009 Sydney
106 Macfarlane, Steve., Director, Caulfield Aged Psychiatry, Service, Caulfield Hospital, Working with people with hoarding behaviours, DVD. A learning resource containing practical strategies designed to assist
Victorian Home and Community Care (HACC) staff working in this area. Copyright Vision Australia, 2010.
Page 27 of 131
•
recognise the relationship of the property to the person and be non judgmental, leave the control for that
decision with them
•
let the person do things for themselves, service providers motivate and provide guidance to keep going
•
develop agreed systems (for example, working together to clean up – the worker would always ask
108
permission of the person with regard to each item before throwing it out)
•
act respectfully towards the person ensure they know their space is respected and seen as theirs, that
workers are not going to come and takeover.
6.2.2 Consent to intervention or care planning
Obtaining consent from the person to intervene moves through a number of stages, preparedness to receive
initial support is one thing - preparedness to engage in a more planned approach, to clean up or to agree to a
clinical treatment program is another. Once consent has been gained and the aim and type of intervention
agreed, strategies should be discussed with the person seeking their consent to develop an intervention or
care plan
Additional considerations
Hoarding usually requires:
•
sensitivity to the fact that many people who hoard have not allowed anyone into their home in years; a
useful care plan goal can be to encourage the person to allow family and friends into their home on a
regular basis
•
utilising an OHS checklist (refer Appendix 5 – Attachment 4)
•
meetings with the person and appropriate services to review progress
•
planning to achieve short term goals (refer Appendix for sample checklists/inventories)
•
discussing impediments to the process and fostering continued cooperation is paramount
•
a longer-term care plan includes more frequent, regular visits to assist the person to reduce and/or store
excessive items.
There is little evidence to indicate that the nature of items hoarded makes a difference to the type of care
plan, with two exceptions:
•
•
when animals are collected and kept in great numbers, the condition of the home is typically
compromised, and
when hoarded items include rotten food, body products or similar items, a squalid living condition can be
severe.
Squalor often requires:
•
a short term, intensive plan with the need for ongoing services commencing soon after the initial
intervention is complete
•
the initial intervention to include a clean up with permission of the person concerned.
•
effective interventions in cases of severe domestic squalor are commonly expensive and require good
inter-agency collaboration
•
budgetary support must be available to enable appropriate services to take on cases and provide case
management.
109
In a practical sense local councils are frequently involved in responding to severe domestic squalor
notifications to regulatory organisations underpinned by a number of local government laws (for example, the
Domestic Animals Act 1994 and public health authorities),
Referrals to clinical services of people living in severe domestic squalor are not uncommon though little has
been published concerning how best to intervene.
Different studies by groups in London (Ontario) and Sydney (NSW) have recommended the development of
coordinated services to intervene in cases of squalor. A recent review referred to interventions to over 1100
110
identified severe domestic squalor cases, of which half were elderly people.
107 Nancarrow J.,Housing Support for the Aged, Loddon Mallee Housing Service. Working with people with hoarding behaviours, DVD. A learning resource containing practical strategies designed to assist Victorian
Home and Community Care (HACC) staff working in this area. Copyright Vision Australia, 2010.
108 Glenda Hair, Case Manager, Inner South Community Health Service. Working with people with hoarding behaviours, DVD. A learning resource containing practical strategies designed to assist Victorian Home and
Community Care (HACC) staff working in this area. Copyright Vision Australia, 2010.
109 Graham, S., Senior Coordinator, Severe Domestic Squalor Program. McDermott, S., Service Manager, Homeless and Housing Support Services
Page 28 of 131
This review concluded that generally intervention outcomes are often poor. Further studies were needed
using standardised ratings of living conditions to investigate and understand the complex interplay of triggers
and vulnerabilities exploring how best to intervene and examine outcomes of interventions.
6.2.3
Animal hoarding
Intervention in animal hoarding cases is almost always complex. There is no one universal solution. Each
person comes with a different history, a different set of circumstances and resources, unique medical and
psychological diagnoses that may all affect what kind of intervention might work best.
Animal hoarding is taken much more seriously than, for example the hoarding of machinery, however there is
very little known about animal hoarding and very few people trained to assist.
111
Animal hoarding has almost a 100 per cent recidivist rate , meaning the person keeps offending. Some
would say treatment of a person who hoards animals requires a lot of therapy, commitment and
112
preparedness of the person to want to make a change to that behaviour.
The same principles mentioned in Section 6.2.1 apply when animals are involved. Similarly any approach by
local government or others (for example, police) to seize animals or remove hoarders from their home and
113
forcibly clean up the property does not work (refer Section 6.1.1).
Taking away hoarded animals from the
114
location can cause tremendous fear, apprehension, loneliness and grief for the person concerned.
A USA study suggests that to intervene most effectively, it becomes critical to clarify some of the
developmental factors of animal hoarding behaviour and its correlation with self-neglecting behaviours in
general. With enhanced knowledge and understanding of animal hoarding, human service professionals
would be better prepared to respond, evoke greater rapport and cooperation and engage in the
115
interdisciplinary efforts that are essential for optimal resolution.
Cases can present with a different range of intervention considerations due to the poor health status of the
animals and the consequent compounding impact on the living environment.
In 2006, an expert working group developed a preliminary typology of animal hoarders, refer Table 7.
Table 7: Preliminary typology of animal hoarders
Overwhelmed caregiver
116
Rescuer hoarder
Exploiter hoarder
Some awareness, more reality based
Mission leading to unavoidable
compulsion
Tends to have sociopathic
characteristics
More passive acquisition
Fear of death
Lacks empathy for people or animals
Problems often triggered by change
in circumstance
Active versus passive acquisition
Indifferent to harm caused
Unable to problem-solve effectively
S/he is the only one who can provide
care
Rejects outsiders’ concerns
Animals are family members
Rescue followed by adoption becomes
rescue only care
Superficial charm and charisma
Likely to be socially isolated
May have extensive network of enablers
or be a group activity
Lacks guilt or remorse
Self esteem linked to role as
caregiver
Manipulative and cunning
Fewer issues with authorities
Adopts role of expert with need to
control
Each of these types will respond to or require different types of intervention approaches. The overwhelmed
caregiver is more likely to be responsive to a more therapeutically oriented approach, whereas the exploiter
hoarder will most likely require aggressive prosecution for animal cruelty in order to achieve change. The
rescuer hoarder may require a bit of both.
110 Snowdon J., a1 c1 and Halliday G. a2: a1 Discipline of Psychological Medicine, University of Sydney, Concord Hospital, Sydney, Australia. a2 Sydney South West Area Health Service, Concord Hospital, Sydney,
Australia. How and when to intervene in cases of severe domestic squalor. International Psychogeriatrics, 21, pp 996-1002, 2009.
111 Worth and Beck 1982, IOCDF 2010
112 Mogan C., Melbourne based Clinical Psychologist. Extract: Working with People with Hoarding Behaviours DVD. Pub 2010. Copyright Vision Australia, 2010.
113 Kyrios et al, Swinburne University. Melbourne. 2010
114 Patronek 2001., Worth and Beck 1981.
115 Nathanson J. N., Animal hoarding: slipping into the darkness of comorbid animal and self-neglect. Journal of Elder Abuse & Neglect, vol 21, no 4, pp 307-324. 2009.
116 Patronek, Loar, and Nathanson, 2006
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A therapeutically-oriented approach involves:
•
•
•
•
helping the person arrange for desexing of the animals
providing necessary veterinary care
reviewing the environmental condition and how well it meets the animals’ needs for exercise
socialisation, and mental stimulation as well as basic care, and
finding avenues for adoption for whatever number of animals exceeds the person’s capacity for care.
Some kind of on-going informal monitoring and support is also essential.
A law enforcement approach is by nature much more adversarial via enforcement of the anti-cruelty laws. In
some cases, the physical environment is so toxic and the person so resistant to improving conditions, no
other option but forcible removal of the animals is available. As the rules of criminal justice and evidence
collection apply, this approach is more burdensome and complex. Police will obtain a search warrant, and the
animals will be taken into protective custody as the legal process unfolds. This could take months to years,
and if convicted of animal cruelty, could even result in jail time for the offender. Often the media become
involved, and the case is a matter of public record if charges are filed.
Refer Section 8.2 for relevant Victorian organisations which respond to animal hoarding.
Figure 4: Examples of animal hoarding
6.3
Empowering and supporting workers
Empowering and supporting managers, supervisors, specialist staff and direct care workers is always
important. This is even more important when staff are involved in hoarding and squalor cases which are
complex, difficult and can at times be unsavoury work.
There are increasing numbers of staff in health services and community based agencies (refer Appendix 12:
Victorian local service response) who work extremely well with people who hoard and/or live in squalid
conditions.
Staff can be supported in a variety of ways, such as:
•
specific hoarding and squalor education and training opportunities to assist
•
opportunities are delivered via broad learning models (including interactive online or DVD), small or large
groups as well as individual learning options
•
regular acknowledgement of outcomes achieved.
Organisations/services need to acknowledge that this kind of work does not suit everyone. It takes specific
staff and management skills, expertise and character traits to undertake the approach and work required to
manage cases involving hoarding and squalor.
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6.4
Working within appropriate legislative environments
All interventions need to be approached within the appropriate legislative environment (e.g. safety of the
environment, public health, council by-laws, building standards and/or fire safety and at times child
protection).
If a house has deteriorated to the point where it is condemnable, then the authorities have the right to act
which is based more on an administrative decision than a clinical one. Legislation can provide useful
leverage to engage with a person. Often without that lever there maybe little formal reason or opportunity to
approach and engage them, particularly in their living environment.
Engaging the appropriate authorities at an early response stage to discuss the most effective roles and
actions should ensure a sustained outcome.
Some agencies might utilise a legislation response to cause engagement with a person, which might look like
a stronger inflexible intervention, but it can actually enable a more flexible and supportive approach to evolve.
6.5
Post intervention
Nearly all people who hoard or live in squalor will require ongoing service support to ensure the intervention
is sustainable. What service/s is available and the person’s willingness to participate, should all be
considered PRIOR to intervention. Components of post intervention support might include
•
client support - personal support needs based on current need and history
•
service provision - service suitability, eligibility and availability
•
prevention - is there a need for any continuing regular service support or monitoring?
6.6
Educating the community
Very few cases involving poor living conditions are resolved quickly. Many people living in poor living
conditions do not admit or recognise there is a problem. Often the issue is discovered and reported by
neighbours, relatives or friends who are concerned and want to see some kind of improvement.
Concerned members of the community might initially contact local government, public health and by-laws
officers who can then include other sectors as needed. However, official responses and orders from local
government and body corporate groups are often ignored, denied or refused by the person concerned.
A house can be filled with pieces of machinery and not impose a health risk nor condemn the property.
Finding the balance between individual living conditions and community safety is difficult, the spectrum is
broad. It is impossible to establish a global rule indicating at what stage an individual has a right to carry on
hoarding behaviours, balanced against community and individual safety.
The way in which the person is informed of the issue or concern can determine how effectively and
successful an outcome can be achieved. Planning and reviewing intervention needs to maintain a balance of
responsibility between the person concerned and those around them.
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7
7.1
Assessment and testing tools
Assessment
Assessment drives appropriate service response. As hoarding and squalor constitute significant health
hazards, clutter is the first matter to address. It is important to distinguish whether the clutter is an effect of
compulsive hoarding or a result of physical or mental impairment, such that the person is unable to attend to
his or her living quarters. In the latter instance, suitable cleaning assistance should suffice.
If active or passive hoarding (or both) is the problem, an assessment would be required including the
possibility of referring the person (if they agree) to an appropriate psychologist for treatment or coach a
caregiver in management techniques. Not all people who hoard or live in squalor would agree to a referral for
treatment as part of their care plan, particularly not initially.
Caregivers can assist in reducing hazardous clutter in a number of ways as well as utilising resources
117
available. For example, the New York City Hoarding Task Force has prepared a series of reports on
hoarding including tips for managing it, both in general and in the context of dementia (refer Appendix 4).
Collegiate effort between a broad range of community and health service providers (refer Appendix 5:
Attachment 3.1 Impact of Squalor Checklist), can assist in managing cases in a variety of ways, depending
on the expertise required and available. No one service response has been found to be effective for all
compulsive hoarding cases.
Considerations
Assessment strategies will involve a multi-disciplinary team or network, long term involvement and on-going
support, taking into consideration the individual, the environment, the property, the community and any
specialist, one off or ongoing services required.
A major factor in resolving cases of compulsive hoarding or severe domestic squalor will be the length of time
that the person has been living in such conditions. The situation is best addressed as soon as it has been
identified, as the longer it is allowed to exist the harder it is to resolve.
A home assessment is highly recommended as it provides significant decision making information as to
where to begin declutter efforts. Visits by someone the person trusts, begin to desensitise the person to
118
visitors. Background information is also useful.
A person with hoarding behaviours may well be hospitalised often for a general medical problem, and it may
be discovered she/he is living in a hoarding or squalid state when discharge or post operative care is being
arranged. Medical personnel might assess for a mild cognitive disorder or a psychiatric disorder underlying
the hoarding behaviour, taking into account the person’s capacity to make reasoned decisions prior to
returning to their home environment.
7.2
Tools - hoarding
Various questionnaires and interview checklists have been created over the years to assess compulsive
119
hoarding and squalor. They have been developed by academics for research, clinical application and for
the many sectors involved in working with people living in hoarding or squalid circumstances.
Most of these tools or measures can be used by assessment officers or therapists in a home environment
and can be divided into:
- those that are subscales of general measures of obsessive-compulsive disorder (for example,
Obsessive-Compulsive Inventory and Yale-Brown Obsessive-Compulsive Scale) and
120
- those that were developed specifically for hoarding and related phenomena.
117 New York City Hoarding Task force. Practical tips refer: http://www.cornellaging.org/gem/hoa_bes_pra.html?name1=Best+Practices+Decluttering+Tips&type1=2Active. 2003
118 Refer: NSW Catholic community Services squalor and hoarding toolkit: http://www.catholiccommunityservices.com.au/squalorandhoarding
119 Rasmussen, Steketee, Brown, Frost, and Tolin (submitted) 2010, Refining the diagnostic boundaries of compulsive hoarding: A critical review by Alberto Pertusa | Clinical
Psychology Review, 2009, p. 380
120 Frost, R. O. , Hristova, V. , Assessment of hoarding. Journal of Clinical Psychology, n/a. doi: 10.1002/jclp.20790
Page 32 of 131
The former were largely developed without the benefit of research identifying the nature of hoarding, while
121
the latter capture the specific dimensions of hoarding and are recommended for clinical and general use.
The tools below are those most commonly referred to in the literature, as well as by international, national
122
and local stakeholders to test for hoarding behaviour.
7.2.1 Savings Inventory Revised (SI-R) 123
Probably the most widely used self-report measure of hoarding is the SI-R, a 23-item questionnaire designed
to measure the three main features of hoarding: excessive acquisition, difficulty discarding, and clutter (refer
Appendix 6).
The items are scored zero to four, so SI-R total scores range from zero to 92. Scoring instructions are located
at the end of the questionnaire together with a table of average scores of people who do not suffer from
hoarding, as well as cut offs for what is thought to indicate a probable hoarding problem. There are extensive
data supporting the reliability and validity of the SI-R.
Several recent studies have indicated that the SI-R is reliable and can discriminate identified hoarding cases
from non-hoarding controls and non-hoarding OCD cases. No gender differences are apparent for the SI-R
total, Clutter, or Difficulty Discarding, although women score higher on Acquisition, which reflects the gender
differences seen in studies of compulsive buying.
One limitation of the SI-R inventory tool is the use of self-reporting to determine hoarding status and severity.
Poor recognition of a person’s own hoarding problem can lead to underestimation of hoarding, therefore
there is a need for a different kind of tool or adjustments to this one.
Use: Appropriate instrument for assessing symptoms of compulsive hoarding in clinical and non-clinical
environments between a worker and the person concerned.
7.2.2
Hoarding Rating Scale – Interview (HRS-I)124
The HRS-I is a five-item semi-structured interview that assesses hoarding and its critical features and can
also be used as a questionnaire.
The five questions include three about clutter, difficulty discarding, and excessive acquisition while the
remaining two focus on distress and interference caused by the hoarding behaviour. Initial studies suggest
that a score of 14 or higher indicates a probable hoarding problem (refer Appendix7).
Use: Appropriate for assessing symptoms of compulsive hoarding in clinical and non clinical environments
between a worker and the person concerned.
7.2.3
Hoarding Assessment Tool (HAT) 125
HAT is a comprehensive four page document made up of three components: a telephone screening,
condition of the dwelling and client assessment (refer Appendix 8).
Use: Appropriate for an initial assessment including the environment when on site and face to face with the
person concerned.
7.2.4
Clutter Image Rating Tool (CIR) 126
One problem with both the self-report and the observer-report of clutter is that they can be heavily influenced
by individual interpretations of what constitutes clutter. For some people a room with a few piles of papers
and books seems ‘heavily cluttered’, while for others the room would be seen as free of clutter.
The CIR is a novel assessment device designed to provide a measure of clutter that is more objective and
not dependent on beliefs about what constitutes clutter. Unlike other tests for rating clutter, CIR requires no
written language.
121 A case illustration and additional clinical considerations in the assessment of hoarding is provided. © Wiley Periodicals, Inc. J Clin Psychol: In Session 67:1–11, 2011.
122 Refer: The International OCD Foundation website http://www.ocfoundation.org/hoarding/tests.aspx
124 Tolin, D.F., Frost, R.O., & Steketee, G. (2010). A brief interview for assessing compulsive hoarding: The Hoarding Rating Scale-Interview. Psychiatry Research, 178, 147-152.
125 Frost, R., Developed this tool.
126 Frost, R., Steketee, G., Tolin, D., & Renaud, S. ( 2008). Development and validation of the clutter image rating. Journal of Psychopathology and Behavioural Assessment, 30(3), 193–203. DOI: 10.1007/s10862-0079068-7.
Page 33 of 131
The scale contains nine equidistant photographs of clutter severity representing each of three main rooms of
most people’s homes: living room, kitchen, and bedroom (refer Appendix 9).
In general, clutter that reaches the level of picture number 4 or higher impinges enough on people’s lives that
they should be encouraged to get help for their hoarding problem. The scale has been demonstrated as
127
being effective above level four.
The CIR helps eliminate different definitions of hoarding between data collectors and the under- or overestimation of clutter. Different evaluators are able to use this tool to evaluate the level of hoarding in a
household with very similar results, given CIR’s high test-retest reliability.
The CIR has been used in a variety of recent studies and has been found to correlate highly with the HRS-I,
128
in particular, the clutter item and has also been found to be sensitive to treatment effects.
Use: The CIR measures only one component of hoarding, clutter and must be supplemented with measures
of the other aspects of hoarding. The worker, person/s living in the environment, therapist or researcher,
simply matches the level of clutter in the room being examined to one of the pictures in the CIR.
Figure 5: Examples of difficult to access hoarding house and clean out of a squalid living environment
7.3
Tools - squalor
Taking into account the subjective nature of the issue there have been several attempts to measure poor
129
living conditions by measuring domestic squalor on a rating scale.
There are not many tools available for testing squalid environments, keeping in mind that squalor is reflecting
a living environment, rather than the person/s living there. In many cases it would appear that the hoarding
assessment tools are also used for squalor, particularly where the two conditions overlap.
7.3.1
Environmental Cleanliness and Clutter Scale (ECCS)130
The tool most used for testing squalor environments is the ECCS (published July 2009), which provides a 10item rating scale to rate the degree; severity and various aspects of clutter and uncleanliness in relation to
squalid environments (refer Appendix 10). The ECCS was adapted from an earlier scale which had limited
reliability and validity.
127 These pictures are published in the treatment manual “Compulsive Hoarding and Acquiring: Therapist Guide, Oxford University Press” and in a self-help book “Buried in Treasures: Help for Compulsive Acquiring,
Saving, and Hoarding, Oxford University Press.”
128 Tolin et al., 2010.
129 Central Sydney Area Health Service. 2003.
130 Halliday G, Snowdon J. The Environmental Cleanliness and Clutter Scale. International Psychogeriatrics 21, 1041-1050, 2009. Cambridge Journals, International Psychogeriatrics (2009), 21:1041-1050. Copyright
© International Psychogeriatric Association 2009. DOI:10.1017/S1041610209990135. Published online July 2009. Refer http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=6417712
Page 34 of 131
Using the ECCS, descriptions of cases can be grouped according to severity or into:
1. those where accumulation of useless items and articles have obstructed proper care of a person’s living
conditions - ‘dry squalor’.
2. those where filth and refuse have accumulated because of failure to get rid of them; there may be filth
without a lot of clutter or can be ‘wet squalor’
3. both (1) and (2).
The ECCS has good inter-rater reliability and validity when compared with other ratings of squalor. The
overlap with hoarding is unknown, although one of the items on the ECCS is the accumulation of objects.
Use: The tool is seen as an excellent scale for use by workers, therapists, researchers and the person living
in environment, as it is accessible and provides an immediate rating of where hoarding might exist.
The ECCS proved reliable and useful in rating cases where elderly people were living in severe domestic
squalor. It is recommended that the tool be completed by more than one party to increase the likelihood of
subjectivity.
7.3.2
The Living Conditions Rating Scale (LCRS)131
Taking into account the subjective nature of the issue there have been several attempts to measure poor
132
living conditions by measuring domestic squalor on a rating scale.
Use: The LCRS (refer Appendix 11) enables government and community organisations to gauge the nature
and urgency of the issue. It promotes better planning and intervention strategies, especially when seeking the
support and assistance of other agencies or family members.
For example:
131 Adapted from published criteria: Macmillan D, Shaw P. Senile breakdown in standards of personal and environmental cleanliness. BMJ 1966:I:1032-37. Clark A.N., Maniker G.D., Gray I., Diogenes syndrome: a
clinical study of gross neglect in old age. Lancet 1975:I: 366-68.
132 Central Sydney Area Health Service. 2003.
Page 35 of 131
8
Service response
In the context of theoretical uncertainties, people who show hoarding behaviours or live in squalor still need
to be accurately assessed, supported and treated.
Worldwide reports suggest that agencies are generally uncoordinated and consequently inefficient when
trying to intervene and offer assistance. Countries such as the UK, different states in the USA, Japan,
Canada and New Zealand all contribute consistently to current thinking and positioning regarding the best
way respond to compulsive hoarding or squalor across a variety of professions and sectors.
8.1
International and National
A broad body of international research and models of service response to compulsive hoarding is referred to
throughout this paper including research, tools, checklists and efforts to show prevalence.
Identifying international domestic squalor intervention models has proven to be difficult due to the fact that
133
the domestic squalor model is seemingly unique to Australia. Squalid environments exist world wide, but
are diagnosed in a range of different contexts depending on which country. For example, in the USA and UK
domestic squalor is aligned with Diogenes Syndrome, self-neglect or elder abuse. The terms severe squalor
and compulsive hoarding are often referred to interchangeably, without clarity or regard for definition, context
or health status.
Australian service response to hoarding or squalor differs between states and territories. Distinct initiatives by
discrete organisations are at times supported by a one-off commitment from a respective state or territory
government. Some of these initiatives are presented in Appendix 5: Examples of national service response.
Some Australian states and territories refer to the term severe domestic squalor to describe certain types of
living conditions (refer Section 3.2).
Some community organisations and academics from a broad range of sectors have been working together
endeavouring to instigate a national focus to coordinate and define appropriate and sustainable responses to
squalor (refer Appendix 5: Examples of national service response).
8.2
Victoria
A broad range of sectors and disciplines in Victoria are involved in developing means and approaches to
address the needs of people living in hoarding and/or squalid conditions (refer Appendix 12: Victorian local
service response)
What initiatives are developed and how they are acted upon is often driven by the interest, determination and
ability of particular staff and management in organisations in a local area or region. The capacity of a service
or organisation to respond may depend on competing organisation/sector priorities or demands, resource
availability or occupational, health and safety concerns, as well as not understanding the condition and
consequent appropriate response.
Scope of service response
These programs and services are part of a local service mix that responds to compulsive hoarding cases.
Service response varies from region to region and within regions, involving a diverse mix of Commonwealth,
State and Local government resources as well as private businesses.
Table 8: Scope of Victorian service response
State Government
Ageing and Aged Care
- Home and Community Care – (jointly funded by the Commonwealth and
Victorian governments)
- Aged Care Assessment Services, Victoria (jointly funded by the
Commonwealth and Victorian governments)
- Low Cost Accommodation Support programs (Community Connections
Program; Housing Support for the Aged; and the Older Persons High Rise
Support program, funded by Aged Care, Mental Health, the Home and
Community Care program (jointly funded by the Commonwealth and
133 Halliday et al.,2000.
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State Government
Victorian governments)
Community Health Services
Mental Health
- Aged Psychiatric services
- Primary Mental Health Teams (not direct service delivery, mainly support
for GP’s in providing care to people with mental illness)
- Triage (24x7)
- Adult Clinical services (especially the Continuing Care Teams)
- Psychiatric Disability Support Services.
Health Protection (Environmental Health)
Sub acute services (for example,, Cognitive, Dementia and Memory
Service)
Integrated Care (for example, Hospital Admission Risk program,
Partnership and Integration)
Department of Human Services
Housing and Community Building
- At Risk Tenancies Program currently under evaluation
- High and Complex Needs Program
- Indigenous Tenancies at Risk
- Social Housing Advocacy and Support Program
- Homelessness Response Programs: Transitional Housing Management,
Rooming House and Crisis Accommodation providers.
Youth Justice
Child Protection
Regional child protection programs
Disability
Service Delivery and Performance
- Multiple and Complex Needs Initiative
Department of Justice
Melbourne Metropolitan Fire and Emergency Services Board
Victorian Country Fire Authority
(both organisations report to the Minister for Police and Emergency Services
and Minister for Bushfire Response, Minister Ryan)
Victoria Police (as needed at a local level)
Consumer Affairs Victoria
Department of Primary Industry
Animal Health Field Services - service response role in relation to livestock
animal hoarding
Bureau of Animal Welfare – policy and legislation
Commonwealth Government
Department of Health and Ageing
- Community aged care packages
- Assistance with Care and Housing for the Aged
- Carelink
Department of Families, Housing,
Community Services and
Indigenous Affairs
- Mental Health: Personal helpers and mentors
Local Government
Services response types
- Municipal Local Laws (also known as by-laws)
- Animal Management
- Environmental Health
- HACC services
- Town Planning (Planning Enforcement/Investigative)
- Building Department
- Municipal Fire Prevention
- Health Promotion
- Community Development
Health Providers
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State Government
General Practitioners
- Local/regional
Geriatricians
- Local/regional
Psychiatrists
- Local/regional
Psychologists
- Local/regional
Other
State Trustees
VCAT
OPA
Utility services
RSPCA
Environment Protection Authority
Victoria
ChildFIRST/Family Services
- estate management (rental properties)
- evictions, rental arrears
- guardianship issues
- water, gas, electricity
- RSPCA inspectors – role in relation to hoarding of animals (other than
livestock species)
- advice regarding transport and disposal of contaminated items (asbestos or
chemicals)
- funded by Department of Human Services to support vulnerable children
and families
Private business
Specialist Clinical Practitioners
Industrial cleaning companies
Real Estate Agents
Amenities companies
Legal practitioners
Dr Christopher Mogan a Clinical Psychologist, Director of The Anxiety
Clinic, Richmond, with compulsive hoarding expertise having completed the
first major study of Compulsive Hoarding in Australia (refer 8.3.2).
Professor Michael Kyrios holds the Chair in Psychology in the Faculty of
Life and Social Sciences, Swinburne University of Technology where he is
Director of the Brain and Psychological Sciences Research Centre (BPsyC),
and chairs the Executive Committee of the National e-Therapy Centre (refer
8.3.3). He is a researcher, teacher, trainer, supervisor and practitioner with
world leading expertise in compulsive hoarding. He supervised Dr. Mogan’s
study, collaborates with Professors Frost and Steketee from the USA, and
leads a team of clinicians and researchers focusing on hoarding.
sensitive to the needs and approaches required to clean/organise the home
of people with compulsive hoarding problems and/or living in a squalid
environment (refer Useful resources).
rental properties (issues regarding eviction)
water, gas, electricity
estate management, financial management
8.2.1 Ageing and Aged Care Branch
•
Home and Community Care (HACC)
The HACC Program offers a range of services to support frail older people, younger people with disabilities
and their carers. These services provide basic support and maintenance to people living at home and whose
capacity for independent living is at risk, or who are at risk of premature or inappropriate admission to longterm residential care. Services available include domestic assistance, property maintenance, delivered
meals, social support and day programs, assistance with showering and other personal care requirements.
This program is funded jointly by the Commonwealth and Victorian governments. Local government in
Victoria is a major provider of HACC services and also contribute significant funding to the services they
provide. Other HACC providers include community health services , district nursing services and a wide
range of non-government organisations including Aboriginal and ethno-specific organisations.
As a generic service program, HACC services understand that service response to compulsive hoarding
cases relies on clinical and practical expertise. Home and Community Care service providers are aware that
it is part of a broad range of service types and disciplines that might assist in such cases. Occupational
Health and Safety considerations need to be taken into account (refer 9.3.1).
Currently some HACC funded providers respond to compulsive hoarding on a case by case basis along with
other services, such as municipal local laws, RSPCA or CFA. HACC funded providers might also participate
in local education sessions to better understand the nature of compulsive hoarding.
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•
Aged Care Assessment Service (ACAS)
The Aged Care Assessment Service (ACAS) consists of independent teams who assist frail older people and
their carers to identify what kind of care will best meet their needs. The teams are multi-disciplinary and
include health professionals such as medical officers, social workers, nurses, occupational therapists and
physiotherapists.
They conduct comprehensive assessments for people needing community services or residential aged care
services and assess for all restorative and potential care options. ACAS approval is mandatory for access to
Commonwealth funded residential care, residential respite, Community Aged Care Packages (CACPs),
Extended Aged Care in Home (EACH) packages or Extended Aged Care in Home Dementia (EACHD)
packages and flexible care. ACAS teams do not deliver in-home support or residential care services, but may
provide short term care coordination in complex cases.
ACAS teams may support other service providers to engage eligible clients in cases involving compulsive
hoarding. Some ACAS teams are more engaged in local sector response to compulsive hoarding than
others. The extent of ACAS involvement varies across teams depending on capacity, the mix of other service
providers in local areas, and the particular professional interest in that health service or locality.
ACAS currently has no standardised tools or best practice standards developed to address compulsive
hoarding cases.
•
Low Cost Accommodation Support Programs
All three programs below provide support by funding community based organisations (refer Appendix 13)
which provide services to people with complex needs, including people with compulsive hoarding behaviours.
Community Connections Program (CCP)
The CCP recognises that people with multiple or complex needs who are homeless or living in insecure or
low-cost accommodation are often very isolated and not well connected into health, housing or community
services. These people tend to have difficulty negotiating their way around services and often slip through the
gaps in service systems.
The CCP uses an assertive outreach model to proactively find, engage, assess, and link people into the
services they need. Each CCP service has a pool of flexible care funds to assist clients to overcome a
pressing need or crisis. There are currently 16 CCP services located across Victoria, most commencing in
the year 2000. CCP services are HACC and Aged Care funded. This program currently has no age limit, nor
any defined period of engagement with the client.
CCP works with local services assisting them to become more accessible and responsive to the needs of this
client group.
Housing Support for the Aged Program (HSAP)
HSAP supports people 50 years and over with complex needs and a history of homelessness to maintain
long-term public housing and improve their health and wellbeing. Ongoing case management and support is
provided as they enter public housing through the priority segments of the Segmented Waiting List or into
community managed housing, or those already in public housing where their tenancy is at risk.
This client population typically have:
•
•
•
complex support needs associated with combinations of conditions (for example, psychiatric disability,
alcohol or drug dependence, acquired brain injury, sensory disability, age-related frailty or chronic health
issues)
a history of homelessness and social marginalisation
minimal support from friends and family and not well linked into services.
HSAP provides low-level monitoring, case management to coordinate client access to services, and practical
assistance such as helping clients to get to appointments or linking them into social and recreational
activities. Workers have access to a flexible pool of funds to overcome crises (including evictions) or respond
to a pressing need that cannot be readily met by existing services.
HSAP clients are usually identified and referred by CCP. There are currently 13 HSAP services in Victoria,
most commencing in 2000-2001 and funded by Aged Care. Most employ one worker and have a capacity to
support 20 to 25 clients at any point in time.
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The Older Persons (OP) High Rise Support program Persons (OP) Hi Rise Support Pro
The OP High Rise Support program commenced in 2001–02 and is funded by the Aged Care Branch to
provide monitoring and support to tenants of eleven older persons’ high-rise public housing estates in the
inner suburbs of Melbourne.
On-site workers use a case management or outreach approach to ensure isolated and vulnerable tenants are
linked to support and services. These tenants often lack support from friends and family and may have a
history of not being well linked into health and community services. People with mental illness, drug or
alcohol dependence and acquired brain injury are highly represented.
OP High Rise Support workers have a flexible pool of funds which are used to assist vulnerable tenants who
have unmet, complex needs and to access services. The workers provide an accessible point of contact,
information and referral for all tenants, which contribute to their sense of safety, independence and security,
contributing to their involvement in social activities and community life.
Additional comments:
The CCP was designed as a throughput model with Care Coordination. Over time, it has become a case
management service although this was not the original intention.
All three of these programs tend to work with highly complex clients. Consequently it is often difficult to refer
to the generic service provider. All three programs respond to hoarding cases and are involved in the life of
the client. The specifics around how to respond to hoarding are left up to staff at the local level.
8.2.2 Integrated Care
The Hospital Admission Risk program (HARP) provides specialised client-centred medical care and care
coordination in the community or ambulatory setting through an integrated response of hospital and
community services. HARP aims to:
•
•
•
•
improve patient outcomes
provide integrated seamless care within and across hospital and community sectors
reduce avoidable hospital admissions and emergency department presentations
ensure equitable access to healthcare.
Some HARP programs, depending on their purpose, respond well to cases of hoarding and squalor (refer
Appendix 12: Point 8).
8.2.3 Public Health, Environmental Health Unit
The Environmental Health Unit (EHU) responds to a range of issues including complaints, enquires or
concerns in relation to hoarding and/squalor.
The Public Health and Wellbeing Act (PHWA) 2008 (effective January 2010) replaces the previous Health Act
1958. The PHWA updates and modernises Victoria’s public health framework and is a key piece of legislation
designed to protect the health of the population.
The two main components of the PHWA in place to respond to hoarding and/or squalor are:
a) Section 58 PHWA (nuisance provision) as well as the Municipal Association of Victoria PHWA
Guidance Manual for Local Government Authorised Officers (2010) provides more detailed information
regarding the use of the PHWA 2008 enabling response to hoarding situations.
The EHU sees that a multi disciplined, multi sector response is required to better address and sustain
improved outcomes for people with hoarding behaviour, their families and when appropriate, the nearby
community.
Tools that may be useful for an environmental health officer in determining a ‘nuisance’, in addition to
setting goals for a clean-up, are the ‘Clutter-Hoarding Scale’, with parameters on health and safety
issues and, the ‘Clutter Image Rating’. This shows a series of hoarding images to assist in rating the
extent of hoarding and for communication of this information to other agencies, for example, ‘bedroom is
class 7 on the Clutter Image Rating’.
An authorised officer has the following powers in seeking to enter a residential premise:
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b)
•
With the consent of the occupier, as per section 168(1)(b), for the purpose of investigating whether
there is a public health risk or to manage or control a risk to public health, an officer may enter any
premises including any residential premises. Consent is not required to enter a public place.
•
Without a warrant at any time if, as per section 169(2)(a), the officer believes there may be an
immediate risk to public health; and, (b) the entry is necessary to enable the authorised officer to
investigate, eliminate or reduce the risk.
•
At any time, as per section 169(3), for (a) the purposes of investigating a possible contravention of
this Act or the regulations, with the consent of the occupier; or (b) with a warrant issued under this
Act.
Part 6 PHWA (Prescribed Accommodation) applies mainly to rooming houses and associated health
standards and conditions.
•
Consumer Affairs Victoria has certain responsibilities under the Residential Tenancy Act (1997) regulating tenancy relationships between a landlord and tenant as well as regulating rooming house
agreements between rooming house residents and rooming house operators.
•
Local government health promotion officers are linked and supported by the Department of Health,
Prevention and population health unit.
Responding to hoarding and/or squalor cases can draw a response from any or all of these contact points.
8.2.4 Mental Health
The specialist, public mental health system consists of clinical services and psychiatric disability rehabilitation
and support services. Clinical mental health services are managed by public hospitals and provide
assessment, diagnosis, treatment and clinical case management to people with a serious mental illness.
Psychiatric disability, rehabilitation and support services are provided by non-government community
organisations.
Specialist clinical mental health services in Victoria are provided on an area basis, and are often referred to
as area mental health services. They include adult mental health services, child and adolescent mental
health services and aged persons mental health services providing services primarily to people aged 65
years and over. Each of these service categories provides inpatient psychiatric services, in addition to a
range of residential and other community-based services.
The presence of a mental illness does not in itself necessitate a referral to a specialist mental health service..
Most people with a mental illness are effectively managed by services in the community such as GPs or non
specialist community based services.. People enter the Area Mental Health Service (AMHS) system not
because of a particular diagnosis but because the level of risk or behavioural disturbance that cannot be
managed safely by their GP or general community based service providers.
AMHS components are made up of multidisciplinary teams that provide community-based assessment,
treatment, rehabilitation and case management, acute inpatient services, and specialist bed-based services
in residential care.
Access to specialist mental health clinical services is via triage which is centralised for each catchment area.
Telephone contact numbers can be accessed at
http://www.health.vic.gov.au/mentalhealth/services/index.htm
Responses to people with hoarding behaviours are assessed on a case by case basis.
Department of Human Services
8.2.5
Multiple and complex Care Initiative (MACNI)
The Multiple and Complex Needs Initiative (MACNI) was implemented in August 2004, as a result of a history
of concerns that the government was delivering poor service outcomes for a small but significant group of
individuals with complex needs that challenged existing policy and legislative frameworks.
MACNI targets individuals 16 years and older with multiple and complex needs, centreing on a time-limited
specialist intervention that aims to:
•
•
•
stabilise housing, health, social connection and safety
pursue planned and consistent therapeutic goals for each individual, and
provide a platform for long term engagement in the service system.
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On 1 June 2009, new legislation via the Human Services, Complex Needs Act 2009 devolved some of the
decision making powers to Department of Human Services regions and some change to the MACNI model
including:
•
Legislation which remains in place to determine eligibility criteria, a framework for assessment and care
plan coordination, information sharing provisions and right of refusal. The statutory body MACNI Panel
ceased.
•
The maximum service period increased from two to three years, to include assessment, planning and
transition.
•
The continuation of specifically funded Community Service Organisations (CSOs), 10 staff, a state-wide
remit, to conduct assessments, develop and coordinate care plans, with a strengthened role in secondary
consultation and mentoring with local agencies and with regional panels.
•
Access to brokerage funding regionally and centrally. Regions can approve locally held brokerage funds;
extra funds, available centrally, can be approved on application.
•
A Central Eligibility and Review Group (CERG) consisting of senior program managers and senior
practitioners from the Department of Human Services, Department of Health and Department of Justice,
as well as community experts (including former MACN Panel members) - determine eligibility.
•
Regions approve and review care plans as needed, but are subject to periodic review by CERG,
including when central brokerage funds are requested.
MACNI is a tightly focused program, predominately addressing the needs of people living with substance
abuse and related concerns. Service Delivery and Performance (SDP) coordinates MACNI funding. MACNI
care plan coordinators may respond to hoarding issue on a needs basis, case by case.
8.2.6
Housing and Community Building (H&CB)
H&CB provides public and social housing and support for those most in need, including homelessness and
crisis support, affordable rental housing and training and employment opportunities for people in public
housing. H&CB aims to drive a more connected service that offers not only stable housing, but the
opportunity and support for people to grow and thrive in their community.
A)
Support for High Risk Tenancy Program (SfHRT)
SfHRT evolved from a Department of Human Services Strategic project (2005–06), into receiving additional
funds (2008-12) to achieve the objectives from the original pilot which were to strengthen the human service
system response to complex clients through the integration and co-ordination of services to:
•
•
•
•
facilitate access to service responses to address client need
create sustainable tenancies for individuals or households with high and complex needs
develop greater understanding of client needs and service response options and promote learning
identify service development opportunities (gaps) and action these with the aim of increasing regional
capacity.
The program underpins Department of Human Services principles of prevention or early intervention, joint
working, planned and coordinated service delivery and flexibility in the type and duration of service response
and resourcing.
The project focused specifically on high-risk tenancies in public housing. In certain circumstances, however,
clients with complex needs who were not currently residing in public housing could also be eligible for
consideration by the regional coordinator.
The project recommendations highlighted that people in high-risk tenancies were identified as having many
problems and complex life situations, with characteristics similar to other Department of Human Services high
risk client groups who often require a service response crossing program boundaries, as well as requiring
coordination and flexibility. A priority Action Plan identified four main priorities:
134
1.
2.
3.
4.
make links with and build on established initiatives
resource development and staff training
consolidate evidence about the client group and what works
establish regional coordination processes.
134 DHS, October 2006 (pages 32 and 33), refer: http://www.dhs.vic.gov.au/__data/assets/pdf_file/0004/572413/support_for_high_risk_tenancies_report_03-November-2006.pdf
Page 42 of 131
Much of the implementation of the Action Plan is undertaken at a local level between Department of Human
Services regional programs, other sectors and a broad range of service providers. SfHRT regional
coordinators are able to lead the case coordination or planning phase.
The SfHRT Regional Coordination program has brokerage money which provides in hoarding cases, the
resource flexibility required for things like clean ups and purchasing case management services.
Eligibility - referral to the SfHRT program requires that:
• the person is not responding to multiple intervention attempts
• the person is experiencing extraordinary difficulty accessing required intervention
• the person has exhausted many of the common interventions for their presenting behaviours or
circumstances
• the service system has experienced ongoing difficulty with engagement including assertive outreach
• there is evidence of enduring and repeatedly poor outcomes
• the person is experiencing multiple and repetitive crises
• there is a multiplicity of views among program or service providers regarding the most appropriate
service response(s) and no clear agreement on a way to proceed.
Regional Coordinator’s role involves:
• acting as the single point of entry to the service coordination process, including providing
secondary consultation to programs that are considering making a referral
• enhancing regional service coordination across Department of Human Services programs and the
community service sector
• coordinating services around individuals or families to sustain their tenancy
• regional coordinators receiving direction and support from a regional panel, who have expertise in
working with complex clients and make recommendations in response to individuals or families referred.
Compulsive hoarding response
People with hoarding behaviours became a visible high risk client group, through the SfHRT eligibility criteria,
so the Office of Housing took steps to address it by determining that hoarding:
- affected the person’s capacity to maintain their tenancy agreement (public or private) thereby placing
themselves at risk of eviction
- potentially provides a key pathway to homelessness (for example, rental arrears and unpaid bonds), and
- draws media attention.
The SfHRT program has collected two sets of data since the commencement of the program:
•
A collation of biannual reporting (July 2009–June 2010) compiled into a state-wide report, provided a
snapshot of the SfHRT client demographic and major themes being experienced with at-risk tenancies.
Originally the system design did not include hoarding data, but this requirement has now been built into
the SfHRT annual data collection system.
•
As hoarding became more evident, a snapshot report was undertaken of an identified high-risk cohort.
The data reports on targets, activities and brokerage relating to hoarding/environmental neglect/squalor
for the period July 2010 to May 2011.
Figure 6: SfHRT Data report hoarding/environmental neglect/squalor July 2010 - May 2011
SfHRT Hoarding data
July 2010 - May 2011
Statewide
•
•
Program
targets
Actual
referrals
Number
identified as
Hoarding
Brokerage spent
on hoarding
300
488
181
64%
The Department of Human Services, Office of Housing developed a draft hoarding information kit and
flow charts (refer Appendices 14 and 15) and adapted some practice tools for SfHRT regional
coordinators to implement locally.
SfHRT regional coordinators developed various local strategies based on this information (refer Figure 7
and Appendix 12:point 1,Housing - SfHRT), working with a mix of local service providers from a range of
sectors, to support people with compulsive hoarding behaviours.
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Figure 7: Summary of SfHRT hoarding tasks July 2010 - May 2011
Summary of SFHRT Central and regional tasks achieved - July 2010 to May 2011
•
Provided service coordination (case conferencing) and brokerage to assist in sustaining tenancy.
•
Developed an information toolkit (includes terms of reference, clutter rating chart and service mapping
flowcharts).
•
Contributed funds to support a symposium and two workshops on compulsive hoarding held by the
Australian Psychological Society at the International Congress of Applied Psychology (ICAP).
•
Provided funds to implement training on compulsive hoarding to housing staff and SHASP providers,
state-wide.
•
Created a regional sub working group, to focus on the research data collected that will feed into the
regional project.
•
Provided regional training sessions for housing staff and SHASP providers.
•
Established a regional hoarding working group with a range of interested stakeholders. This group has
evolved and split into an interest group and an action group.
•
Facilitation of a forum on hoarding.
•
Developed regional guidelines on the use of brokerage for hoarding and environmental neglect.
•
Funded two professional consultation sessions with specialist psychiatrist to discuss cases and reflect on
practice.
•
Contributed funds towards a launch event.
•
Held regional information sessions for all interested stakeholders including mental health, housing, aged
care, disability and other local services.
•
Funded regional, quarterly professional consultation sessions with a specialised psychologist to provide
debriefing and advice on practice in relation to supporting those with hoarding issues.
•
Actively participating in a local government working group developing strategies around hoarding
response.
B)
The Social Housing Advocacy and Support Program (SHASP)
SHASP is a Victorian Government initiative planned to achieve improved housing outcomes for social
housing tenants and public housing applicants, forming part of the government’s ongoing commitment to
sustainable tenancies. Community service organisations (CSOs) are funded to support public and social
housing tenancies via the following approaches:
•
•
•
•
Establishing Successful Tenancies (EST)
Intervention At Risk Tenancies (IART)
Early Housing Applications (EHA)
Advocacy (A)
The program provides assistance to tenants to overcome literacy and language difficulties that prevent them
from understanding and responding to contact from the Office of Housing (OoH), as well as involving tenants
in the service planning and management of SHASP services.
C)
Homelessness Accommodation and Support
Victoria has an integrated homelessness and housing system which is designed as a progressive pathway
out of homelessness. The Homelessness Accommodation and Support Unit is responsible for homelessness
program development including crisis, transitional and supportive housing responses.
The Victorian Homelessness Action Plan 2011-2015 is committed to providing greater assistance to
vulnerable Victorians to tackle underlying causes of homelessness. The range of people experiencing
homelessness includes a small but significant cohort of clients with high and complex needs who have
experienced chronic homelessness, multiple tenancy breakdowns or abandonment and sleeping rough for
prolonged periods. These individuals typically often interact with or come to the notice of high cost
emergency or crisis services in the community, with no discernable effect on their wellbeing or long term
housing stability.
Practice and research with this client group indicates a high level of trauma preceding or coinciding with the
onset of homelessness and a close association with a persistent vulnerability to homelessness among this
client group. A range of responses to this client group are being explored by specialist homelessness support
services including:
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Melbourne Street to Home (MS2H): a partnership between HomeGround Services, Salvation Army Adult
and Crisis Services and the Royal District Nursing Service. MS2H identifies and prioritises people in long
term primary homelessness (rough sleepers) according to the fragility of their health, provides assertive
outreach, accommodation and housing focused support with the aim of tenancy retention and positive health
outcomes.
Journey to Social Inclusion (J2SI): Sacred Heart Mission. J2SI is a pilot project (over three years from
November 2009); assisting up to 40 chronically homeless people to break the homelessness cycle by
developing skills to successfully transition into mainstream life. J2SI draws on research that shows people
who are chronically homeless can benefit from individually tailored, on-going, intensive support.
Supportive Housing: Housing and Community Building( H&CB) is developing a range of supportive
housing responses that provide safe, long-term affordable housing combined with support services for
tenants according to their identified needs. These responses particularly support chronically homeless people
with high needs, including those on low incomes experiencing mental health, drug, alcohol and other issues
that can restrict capacity to access secure housing and the support treatments they need.
The people involved in the above programs live with extremely complex issues requiring an integrated
approach from specialist services. One vulnerable cohort within the homelessness service system are people
with hoarding behaviour who require an intensive, coordinated and longer-term response to stabilise and
manage their circumstances.
8.2.7
Disability
The Victorian disability service system provides supports for people with a disability whose impairment meets
the definition of disability as defined in the Disability Act 2006 and the priority for access indicators as
outlined in Disability Services Access Policy.
Disability support services are based on individualised approaches that support people with a disability to live
in their community and complement other funded support available through the broader service system such
as health, housing and community services.
While the disability services system does not have any specific initiatives that target people with compulsive
hoarding behaviours or who live in squalor, consideration of the potential impairment of a person with a
disability in these circumstances is a key indicator in individualised planning processes and whether a
disability service system response is the most appropriate.
For a person with a disability to access specific disability services, a support plan is established that outlines
their needs and goals as well as the strategies required to meet them. This would include a response to
hoarding behaviour and/or squalor if appropriate, and where relevant, referral to other appropriate services
such as mental health.
8.2.8
Protective Services
The Department of Human Services Child Protection program receives reports of children at risk as a result
of child abuse or neglect. Sometimes a report may be about the impact on a child of a parent's hoarding
behaviour or squalid living conditions, or these issues may be identified during the course of child protection
involvement.
Where living conditions pose a significant risk of harm to children, the department will make substantial
efforts to assist the family to address the situation. This may include engaging other services such as family
services, local government, mental health and practical support such as arranging and funding industrial
cleaners or rubbish removal. Children may be placed out of home if necessary to ensure their safety and
development. This can occur either by agreement with their parents or by court order, depending on the
circumstances.
8.2.9
Youth Justice
The Department of Human Services is responsible for the statutory supervision of young people in the
criminal justice system. The department’s Youth Justice Service provides programs and resources to assist
these young people to develop the knowledge, skills and attitudes to manage their lives effectively without
further offending.
Through supervision, offending related programs and linkages to appropriate support services, Youth Justice
promotes opportunities for rehabilitation and development of life skills and works with other services to
strengthen community-based options for young people.
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Should hoarding and squalor behaviours be identified as impacting on a young person's ability to remain in
the community and sustain an offence free lifestyle, Youth Justice will link the young person with appropriate
support services and arrange practical support such as funding industrial cleaners or rubbish removal and in
some circumstances assist with minor repairs and maintenance.
Department of Primary Industry (DPI)
8.2.10 Bureau of Animal Welfare (BAW)
The DPI, BAW is the State Government’s animal welfare policy and legislation unit formed to be the focal
point for liaison, co-ordination and co-operation in animal welfare matters between the states,
Commonwealth Government, local governments and animal welfare agencies in Victoria. The Bureau
administers the Prevention of Cruelty to Animals Act 1986 and the Domestic Animals Act 1994. For general
information on animal hoarding refer to Section 2.5.
Animal hoarding investigations and enforcement are the responsibility of DPI’s Animal Health Field Services
group, the RSPCA and Local Government. DPI and the RSPCA have a Memorandum of Understanding that
DPI will take the lead in investigating animal hoarding in primary production enterprises, and RSPCA will take
the lead in investigating the cruelty aspects of animal hoarding in all other cases. Local Government officers
such as Animal Management Officers have a role in investigating excess numbers of animals (specified
under Local Laws), and those Local Government officers authorised under the Prevention of Cruelty to
Animals Act 1986, may also investigate cruelty cases.
Following an RSPCA seminar on animal hoarding in 2009, a Victorian Animal Hoarding Advisory Group
(AHAG) was formed, with representatives from the RSPCA, Local Government, Australian Veterinary
Association and DPI. AHAG is managed and chaired by BAW in DPI. Its objectives are to:
•
•
•
•
Consider the relevant legislation in regards to how effectively it addresses animal hoarding cases, and
ascertain whether amendments are needed.
Provide the chair of AHAG with animal hoarding specific advice, to share at broader government
forums/meetings on hoarding to ensure animal welfare, as well as human welfare is considered.
Direct the work of AHAG’s two working groups (Data Collection and Operational Resources).
Implement action plans arising from meetings, utilising contact networks within industry to circulate
information.
AHAG’s Data Collection working group is collecting data such as, the average cost of animal hoarding cases,
and the frequency and details of cases, which can be utilised to provide information about animal hoarding to
broader government forums/meetings.
A Masters in Animal Science student has completed two projects – one looking at the extent of animal
hoarding in Victoria (refer Section 2.5.3), the other using focus groups of RSPCA Inspectors and Local
Government officers to investigate their experiences with animal hoarders in Victoria.
An Honours student has also completed a project examining case studies of animal hoarding in Victoria.
AHAG’s Operational Resources working group is developing resources for enforcement officers dealing with
animal hoarding cases, including guidance on how to interact with hoarders. AHAG has sought the advice of
a clinical psychologist who specialises in hoarding disorders to assist in developing these resources. The aim
is to assist officers in dealing with animal hoarders at an 'early intervention' stage, aiming to prevent cases
progressing to poor animal welfare and cruelty and also at the cruelty stage, when animals have to be seized.
AHAG has assessed whether the Mental Health First Aid course would be of assistance to officers, and has
concluded that a more targeted training program would be of greater assistance.
Commonwealth Government programs
8.2.11 Personal Helpers and Mentors (PHaMs) service
The Commonwealth Department of Families, Housing, Community Services and Indigenous Affairs,
commenced funding the Personal Helpers and Mentors (PHaMs) service in May 2007. It aims to provide
increased opportunities for recovery of people whose lives are severely affected by mental illness.
The service takes a strengths-based, recovery approach assisting people whose ability to manage their daily
activities and to live independently in the community is impacted because of a severe mental illness.
A recovery approach recognises that a person can live a satisfying and contributing life within the limitations
caused by the illness. Recovery does not mean cure.
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The program consists of a Program Manager, Volunteer Co-ordinator, Outreach Support workers and a
Recovery Guide, working with people to assist with:
increased access to appropriate support services at the right time
improved coordination of care
increased personal capacity of self reliance
increased community participation.
Training is provided for volunteers, who are linked with individual clients of the service for the provision of
friendship and social support.
To be eligible for PHaMs a person must:
•
•
•
•
•
•
•
Be 16 years of age or over.
Score three or more on the Eligibility Screening Tool (EST) assessing the impact of mental illness alone.
Be willing to participate in the service voluntarily and able to make an informed decision to participate.
Complete the FaHCSIA provided data transfer consent form.
Be willing to address dual diagnosed/co morbid drug and alcohol issues during program participation.
*
Reside in the postcodes allocated for your particular site .
Not be restricted in their ability to fully and actively participate in the community due to their residential
setting.
Not be receiving or entitled to receive non-clinical community support similar to PHaMs through the state
or territory government as a result of their detention or incarceration.
•
*Note: People who are homeless are automatically eligible for PHaMs.
The PHaMs eligibility criteria, program structure and flexible timeframe respond well to meet the engagement
needs of a person with hoarding behaviour.
8.2.12 Community Aged Care Packages
The Commonwealth Department of Health and Ageing funds packages legislated under the Aged Care Act
1997 (the Act) that target older people with complex care needs who wish to remain living in their own homes
(including residents of retirement villages), and are able to do so with the assistance of a care package. They
must first be assessed by an Aged Care Assessment Service (ACAS) to determine the type and level of
package required.
People can self-refer or be referred through a hospital, community clinic, community nurse, General
Practitioner or other community services. There are three types of packages:
•
Community Aged Care Packages (CACPs) – target older people with low level care needs, principally
providing services to meet their daily living needs which may include bathing, showering, or personal
hygiene, toileting, dressing or undressing, mobility, transfer, preparing and eating meals, sensory
communication, fitting sensory communication aids, laundry, home help, gardening, or short-term illness.
•
Extended Aged Care at Home (EACH) – target older people including personal assistance with high
level care needs which may include: registered nursing care, allied health care (that is, physiotherapist,
podiatrist or other), personal care, transport to appointments, social support, home help, and
assistance with oxygen and/or enteral feeding.
•
Extended Aged Care at Home Dementia (EACHD) packages are tailored to help older people who
experience difficulties in their daily life because of behavioural and psychological symptoms associated
with dementia. Package services are very flexible providing the same full range of services that EACH
packages provide (refer above). They also offer service approaches and strategies to meet the specific
needs of care recipients with dementia who experience behaviours which may impact on their daily
quality of life.
The flexible application of community aged care packages adheres well to be able to assist an older person
with a hoarding condition and/or who may be living in squalor.
8.2.13 Assistance with Care and Housing for the Aged (ACHA)
The ACHA program aims to support older people to secure or maintain housing and care in order to
effectively live in the community of their choice. Services under the Program can include:
•
•
•
identifying frail older clients with support needs
linking clients to suitable care options
linking clients to housing services
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•
•
advocacy and
linking clients to other relevant services (for example, Aged Care Assessment Services, Aboriginal and
Torres Strait Islander communities).
ACHA is a linkage program largely provided by charitable or religious not-for-profit organisations, rather than
a program that provides ongoing care. ACHA providers work with state government housing authorities to
assist eligible clients to obtain better, more stable accommodation. The type of assistance provided for ACHA
clients varies suiting the needs of the individual who is then linked to appropriate community services.
Service Area
Port Phillip LGA
Maribyrnong and Brimbank LGAs
Mansfield, Wangaratta, Benalla, Alpine,
Wodonga, Indigo, and Towong LGAs
Yarra, Darebin, Banyule and Nillumbik LGAs
Knox, Maroondah and Yarra Ranges LGAs
Bayside, Kingston and Dandenong LGAs
Stonnington LGA
Mildura LGA
Yarra, Darebin LGAs
Maribyrnong LGA
Boroondara LGA
Melbourne LGA
Victorian ACHA service providers
Sacred Heart Mission, St Kilda
Western Region Health Centre, Footscray
The Salvation Army Pathways, Shepparton
Spectrum Migrant Resource Centre, Preston
Villa Maria Eastern Community Services, Brandon Park
Southern Health Community Aged Care Services, Dandenong
New Hope Incorporated, Prahran
Mallee Accommodation and Support Program, Mildura
Homeground Outreach, Collingwood
City of Maribyrnong, Footscray
Salvation Army EastCare, Hawthorn
Wintringham Northern Office, Ascot Vale
ACHA is a relatively small but essential service funded by the Commonwealth Government with a national
budget in 2011-2012 of $4.637 million.
8.2.14 Respite and Carelink Centres
The national network of Commonwealth Respite and Carelink Centres are information centres for older
people, people with disabilities and those who provide care and services, which provide free and confidential
information on community aged care, disability and other support services available locally, interstate or
anywhere within Australia.
The Centres also arrange respite when carers need to take a break from caring by acting as a single contact
point for information need by carers, and by organising, purchasing or managing respite care assistance
packages for carers. Hoarding is addressed on a case by case basis, working with other providers to address
the breadth of need.
8.3
Other key stakeholders
8.3.1
Municipal Association Victoria (MAV)
The MAV is well aware that cases involving hoarding and squalor have and do exist in municipalities, but at
this stage does not hold a specific position. The MAV knows that local council practitioners in environmental
health, local laws, town planning enforcement, the HACC program and animal management services have a
broad range of accumulated knowledge and skills to address such cases.
Councils are generally contacted by mental health services or police due to a safety or nuisance concern, of
the person, their family or neighbors with regard to impact on the environment or public health, on their local
amenity or their own property.
The Victorian State and Local Government Environmental Health Officer’s (EHO) are authorised under the
Public Health and Wellbeing Act 2008 (PHWA) which imposes a statutory obligation on the Minister for
Health and each local council, to promote proper standards of public and environmental health within the
state and each jurisdiction respectively.
Section 58 of the PHWA (nuisance provision) as well as the Municipal Association of Victoria PHWA
Guidance Manual for Local Government Authorised Officers (2010) provides more detailed information
regarding the use of the PHWA 2008 enabling response to hoarding situations.
Local Laws officers act in accordance with the discreet local laws of each Council. Not all councils have a
local law enabling response to concerns about hoarding or squalor.
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Animal Management officers act in accordance with:
1. The Prevention of Cruelty to Animals Act 1986 contains various sections relating to how animals are to
kept and cared for – for example. Section 9 'Cruelty' and Section 10 'Aggravated Cruelty' specify
offences relating to the care and treatment of animals.
2. In addition, the Codes of Practice, created under Section 7 of the Prevention of Cruelty to Animals Act,
specifies how animals should be kept and cared for.
3. Under Section 42, Part 3, Division 4 of the Domestic Animals Act 1996, each municipal council can make
local laws relating to the number of animals which may be kept and these can differ from council to
council.
The HACC program acts in accordance with established government policy, procedures and practice.
The MAV has undertaken no specific consultation with local governments to determine a response to
hoarding. In October 2011, the State Council of the MAV resolved that the MAV ask the Victorian
Government to investigate the extent and impact of hoarding across Victorian local governments with a view
to developing a collaborative framework to address this burgeoning issue.
8.3.2
Dr Christopher Mogan, Clinical Psychologist (The Anxiety Clinic, Australia)
Dr Mogan collaborates with the SwinPsyCHE Research Centre at Swinburne University in research and
training in Compulsive Hoarding. He runs training workshops for health professionals in compulsive hoarding
and related areas and is actively involved with professionals from MFB, Department of Human Services,
Office of Housing, local government and the RSPCA. He seeks to raise awareness and provide education
about hoarding issues including animal hoarding.
Currently Dr Mogan runs two hoarding treatment support groups called Compulsive Hoarding and Acquiring:
Group (CHAG) for individuals, couples and families in the community - one at the Inner South Community
Health service, the other at Swinburne University. CHAG is a 12 session group program addressing problems
135
with compulsive hoarding and acquiring.
This group treatment program for hoarding is based on a program developed by Randy Frost and Gail
Steketee (USA) based on principles of ‘cognitive behavior therapy’ which aims to help people develop the
skills to deal with their hoarding (for example, decision making, tolerance for emotions associated with
sorting). The program was adapted for Australia by the Swinburne Psychology Clinic (Prof. Michael Kyrios'
research group). As the treatment group is not government-funded, participants require a Mental Health plan
to be developed by a GP in order to enable payment through Medicare. Dr Mogan also treats individuals.
With regard to community-based practice, Dr Mogan suggests that in some cases, particularly for previously
homeless or complex clients, it is difficult to engage clients in treatment because of the need to have a
referral from a GP, difficulties with travelling to the clinic and the willingness or capacity to engage in social
activities.
Dr Mogan indicates that an ongoing relationship with a key worker is the main determinant of success with
hoarding cases. He supports enhancing existing service system responses at a home care or case
management level, coupled with access to therapeutic resources. Workers need to be skilled to be able to
engage the client in addition to offering cleaning services. Progressive change is visible - photographs are a
useful tool to show improvements to clients marking progress, offering positive reinforcement.
Dr Mogan suggests there is an absence of research around the needs of children in hoarding households,
and that an evidence base needs to be developed in relation to this issue.
8.3.3
Professor Michael Kyrios – Swinburne University
Professor Kyrios collaborates internationally on compulsive hoarding research and publications, including
DSM-V developments. He specialises in the study of depression, anxiety and obsessive-compulsive
spectrum disorders (OCD, compulsive buying and hoarding, problem gambling, Body Dysmorphic Disorder
[BDD]) and chronic medical illnesses.
Prof Kyrios presents regularly and frequently at Victorian, National and International conferences on
compulsive hoarding, including squalor. He works with Professors Randy Frost and Gail Steketee (USA) on
the study of compulsive hoarding and was an invite to be a consultant on a hoarding-related project funded
by the National Institute of Mental Health in the USA. Having undertaken studies of compulsive hoarding in
Australia, he subsequently supervised Dr. Chris Mogan’s PhD study and has continued to develop manual
interventions, internet-based resources and intervention, training modules, and models of care for people
135 Refer http://www.swinburne.edu.au/lss/psychology/pc/compulsive-hoarding-group.html
Page 49 of 131
experiencing hoarding problems. He continues to lead a team at Swinburne University that studies
compulsive hoarding, which includes Dr. Richard Moulding, Dr. Sunil Bhar and Dr. Maja Nedeljkovic. He has
a range of research and clinical resources at Swinburne University focused on compulsive hoarding.
Prof Kyrios advocates strongly for government (state or federal) to help establish a standardised service
response framework (including tools to assist a practical response); specialist and generalist services, both
practical and clinical; opportunities for intersectorial and interdepartmental collaboration, communication, and
training; broad, consistent educational opportunities for workers and managers as well as enhanced research
opportunities. He has also made various offers to make available resources that could facilitate the
establishment of publicly available information, services, appropriate training materials, and the evaluation of
responses.
8.3.4
Royal Society for the Prevention of Cruelty to Animals (Victoria) [RSPCA]
The RSPCA (Vic) was established in Melbourne in 1871 and since that time has become Australia's leading
animal welfare charity being seen as experts in animal care and protection. The RSPCA investigates
incidents of hoarding on a case-by-case basis, though common factors emerge such as:
•
•
•
•
Half of animal hoarders tend to live alone and may be socially isolated.
Up to 75 per cent of animal hoarders may be older women.
The average number of animals kept by hoarders is 39.
Cats, dogs, horses, farm animals and birds are the most commonly hoarded animals.
When investigating animal hoarders, RSPCA inspectors often find:
•
•
•
•
•
Animals have overrun the property.
Filthy living conditions with animal matter accumulating in living areas.
Dead and/or sick animals in the households.
Non-functional household utilities.
Living areas crowded by inanimate objects, furniture, etc.
During RSPCA investigations and following prosecutions the RSPCA Inspectorate and shelters work with
local councils (environmental health; local laws as appropriate), emergency services, social welfare and
mental health practitioners, offering practical advice - working to prevent people with hoarding behaviour from
re-offending. Encouraging people with hoarding behaviour to seek mental health support is critical as the risk
of re-offending is very high.
Prosecutions
In addition to investigating cruelty, RSPCA Inspectors prepare animal cruelty cases and attend court. In the
last year a total of 50 defendants were taken to court, relating to 50 offences (not all related to hoarding).
Whilst the RSPCA's record in prosecution is good, the financial penalty of losing a case can be extremely
high. Court cases and potential appeals can be extremely costly and difficult to plan for. Fines imposed by
the court are allocated to the State Government and while costs can be awarded to the RSPCA, these are
often difficult to recover from the offending person/s.
The following hoarding example involving the Geelong Magistrates Court illustrates penalties deemed
appropriate by the Magistrate's Court. The maximum penalty for any charge under the Prevention of Cruelty
to Animals Act is a $24,000 fine and/or 24 months imprisonment term.
Case study: Animal hoarding and penalties
XX was a known animal hoarder having received arrest warrants in other Australian states. In 2008 RSPCA
Inspectors were called to a property in rural Victoria following information received by Victoria Police that X
and her husband Y were located at a property in the vicinity. Upon arrival at the property a large number of
dogs could be seen, both confined and roaming free, many had obvious leg injuries as they were unable to
bare weight on their legs and displaying signs of aggression such as fighting.
Upon closer inspection of the property and its various buildings, Inspectors calculated there were
approximately 130 dogs, including puppies and three pigs on the property. Many of the animals were in very
poor condition and unsociable. Inspectors identified a number of welfare issues including injuries, sickness,
parasite burdens, deformity, inadequate shelter and inadequate confinement.
127 dogs/puppies were seized from the property by RSPCA Inspectors including 45 dogs and puppies, and
three pigs were removed from the site and placed in the care of RSPCA shelters in Victoria. The remaining 82
dogs and three pigs were unfortunately euthanized under veterinary guidance on humane grounds.
XX pleaded guilty to 20 charges of animal cruelty in August 2009 at the Geelong Magistrates Court and was
convicted of all 20 charges and ordered to pay $20,000 in costs.
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8.3.5
Fire response - MFB
Victorian Fire Services have the dual responsibility of emergency response and community safety with a high
emphasis on prevention of fires and fire related fatalities. The Metropolitan Fire Brigade (MFB) works
collaboratively with the Country Fire Authority (CFA) in relation to hoarding, but leads this work on the basis
that the primary focus of the MFB in relation to fire is residential fire rather than residential fire and bushfire.
Risk factors for fire fighters with regard to hoarding properties, have been highlighted in Section 5.2.1.
MFB identified hoarding in residential fires as a significant issue in 2008, following three preventable
residential fire fatalities within a four month period. Since then MFB has:
2009: - convened two hoarding forums involving key community stakeholders in relation to hoarding from
housing, aged care, assessment services, mental health, disability
- developed and released risk reduction advice based on the WPI study (refer Appendix 16)
- developed a report for the Minister for Police and Emergency Services promoting a state-wide
approach.
2011: - convened two meetings with the Department of Health (Aged Care Branch, Mental Health),
Department of Human Services (Office of Housing, Children Youth and Family Services, Disability
Services Division), Department of Primary Industry (Bureau of Animal Welfare), the Coroners Court
of Victoria and CFA to share information relating to hoarding and squalor.
- MFB developed an internal policy/process to refer people (with their consent) affected by hoarding
and squalor identified via MFB emergency response, to access assessment and possible services.
- provided information on hoarding and squalor and delivered over 70 information sessions to
community and health service providers.
- participated in news media, forums and conferences in relation to hoarding and squalor.
MFB Operations identify hoarding and squalor properties through:
•
•
•
•
emergency response to fire incidents and Emergency medical response
assistance to Victoria Police to gain entry for welfare checks
requests from Ambulance Victoria to assist in the removal of an individual to hospital
post incident Fire Investigation Analysis.
MFB Community Resilience identifies hoarding and squalor properties via inquiries or referrals through:
•
•
•
•
•
•
•
•
•
•
•
•
MFB Operations (Emergency Response)
local government: (Environmental Health, Bylaws and Aged/Disability Departments)
RSPCA
ACAS, Community aged care package providers, Community nursing services, Occupational Therapy,
Acute Health (Social Work)
APATT, Adult Mental Health Services Providers
Office of Housing
real estate agents
VCAT Residential Tenancies List
community housing providers including rooming house operators
child protection and family support services
family members and friends of the affected person
individuals and neighbours of people affected by hoarding.
If not an emergency or following an emergency response
If the incident is not a severe emergency or following the provision of an emergency response, MFB will
attempt to engage the person and gain consent to refer them for assessment and possible services. People
affected by hoarding and squalor more commonly experience a range of health, safety and wellbeing issues
136
which may be able to be addressed by relevant funded services.
MFB use the Environmental Cleanliness and Clutter Scale (ECCS) (refer Appendix 10) to determine what
levels of hoarding fires occur and quantify at what levels fatalities start to occur.
136 Rod East, Fire Investigation Officer, Metropolitan Fire and Emergency Service Board, Melbourne. Working with people with hoarding behaviours, DVD. A learning resource containing practical strategies designed
to assist Victorian Home and Community Care (HACC) staff working in this area. Copyright Vision Australia, 2010.
Page 51 of 131
MFB attracts WPI undergraduate students to undertake studies on a range of subjects
Two studies of particular interest to this paper are:
1.
An Analysis of Fire Incidents Involving Hoarding Households - May 22, 2009
2.
Analysis of Preventable Fire Fatalities of Older People and People with Disabilities: Risk Reduction
Advice for the Community Care Sector – May 2, 2011.
For further information refer Appendix 16: MFB and CFA research studies.
MFB hoarding property notification system
The MFB continues to pursue the development of a Hoarding Notification System which involves placing an
electronic alert on a property address, which in the event of a fire or other emergency, would increase
firefighter preparedness and deliver an improved outcome for the occupant. The ‘high fuel load’ alert ensures
responding firefighters are aware that:
•
•
•
•
•
their access will be compromised by hoarding inside and/or outside the residence
exiting the property will be compromised resulting in an increased need to search for and rescue the
occupant
containment of the fire to the room(s) of origin is less likely
additional fire fighting appliances are more likely to be required
there may be an increased risk to neighbouring properties.
MFB collects data from their firefighters and community based service providers (where consent was
obtained from the occupant) on the notification system. The data:
•
•
•
•
is collected via submission of an electronic form which has no capacity to include the name of
individuals living at the address
is renewed every two years through automatic generation of a renewal notice to the referring service
is automatically removed after four weeks of the request for no renewal, is received
the alert can be removed at anytime.
With regard to the above data MFB advises that:
•
•
•
the information will not be shared with any other agency
while MFB is developing this capacity no agency will be obliged to participate
over the last five years MFB have received an increase in requests from agencies to place an alert on
hoarding properties in order to improve outcomes for the occupant in the event of fire.
There are a range of issues to be worked through for this to occur, some pertinent to MFB, others from
service providers with regard to client privacy and duty of care. Consideration needs to be given to how this
data would be collected, updated and submitted to MFB.
Client consent would need to be obtained for private or rented properties prior to referral for registration on
the MFB system. Consideration needs to given as to whether inclusion on the register could affect property
insurance premiums and what the process for information sharing might be.
MFB has sought legal advice confirming that when a hoarding property is identified in the first instance, MFB
can use the information for the purposes of noting hoarding by placing an electronic tag against the relevant
address in the MFB database.
MFB also obtained legal advice in relation to obligations of external (to MFB) agencies which may elect to
participate in the hoarding notification system. MFB has developed draft documents in recognition of these
obligations which are predicated on the consent of individuals being obtained prior to the referral process to
MFB. While MFB has canvassed informal feedback from potential participating agencies, the engagement of
key state government stakeholders for a formal consultation process is MFB’s focus.
MFB recognises that the use and disclosure of any personal information must comply with the requirements
of applicable privacy legislation. MFB recognises that external agencies may wish to obtain their own
independent legal advice to ensure that any information collected meets appropriate privacy legislation.
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Figure 8: Examples of hoarding households: combustible material
MFB Case example: fire crews had responded to a fire in an elaborate period home, during which the
owner was moving around the environment not saying very much.
The Fire Investigative Officer was called in afterwards to determine the cause of fire. Part of this process
was to chat to the owner of the house whom he noticed was more focused on the discarded water
bottles the firefighters had left on the front veranda whilst fighting the fire. The first chance the owner had
he collected all the plastic bottles, taking them inside the burnt out front part of the house, putting them
to the side possibly for later on.
The Fire Investigative Officer perceived the owner to be coherent though noticed his fixation on the need
to collect and keep the discarded plastic bottles and recognised these as characteristics portrayed by
hoarders. The owner explained that the hoarding process for him started when he was a young boy and
that he was just looking after all of the stuff that was previously stored. When the Officer spoke to the
neighbours after the event, they had no idea that this was occurring inside the owner’s house.
8.3.6
Country Fire Authority (CFA) Research Project on Hoarding in Communities
The CFA is funding a project to research fire incident information that includes the effects of hoarding on fires
and CFA response personnel (refer Appendix 16: MFB and CFA research studies). CFA is looking to gather
sufficient data to better support emergency fire responders.
CFA suggests that responding to hoarding is not the domain of any one agency or department and that their
role is a small part of a complex environment. CFA sees hoarding as a specialist field, requiring mixed
models of treatment and service response.
8.3.7
Fire Safety information in National Community Services Training Packages
In December 2009, the Australian Fire and Emergency Services Australia Council (AFAC) released a
national initiative to embed basic home fire safety information into the national Community Services Training
Package. Basic home fire safety information is now included in the qualifications for a range of community
services workers. The lesson materials for this have been centrally developed to ensure their application and
use in all states and territories.
In addition to use in formal training the material is also recommended for use by community agencies in staff
induction for new workers and skills maintenance for existing workers. The information includes identification
of high risk groups, high risk behaviours and smoke alarms.
The training aims to support community service agencies that provide services to people in community
settings as well as reduce the risk of fire for community service recipients, workers and provider agencies.
The information also has a high workplace to home transferability for the workforce.
Basic home fire safety information is now part of nine separate units of competency which are part of a range
of qualifications including those related to Aged Care, HACC and Disability workers. The material can be
downloaded at http://knowledgeweb.afac.com.au/hfstm.
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9
Victorian response – strengths and
weaknesses
The previous section provides a snapshot of government departments, programs and private enterprises
currently involved in responding to hoarding and squalor cases in Victoria. The examples in Appendix 12:
Victorian Local Service response, reflect a variety of experience from discreet sectors, each unique in their
own right, yet yielding many common themes. These representations are by no means exclusive, as many
other Victorian initiatives are missing which would bring further depth and understanding to this discussion.
9.1
General themes
9.1.1
Multi sector – multi service response
In the majority of cases multiple sectors and disciplines are connecting in different ways, working together to
figure out how best to address and support people of all ages, living with these health concerns.
- Service response includes not only funded organisations but charitable supports such as local church
congregations and in some cases sporting clubs.
-
Information sharing, networking and relationship building were all seen as valuable in terms of referrals
and best practice.
-
Privacy and consent issues often make it difficult to share information and link clients to appropriate
services.
-
The most useful service response was to have direct, hands on workers as well as secondary
consultation and advocacy, that works across sectors.
-
The idea of imbedding a hoarding program into an existing organisation rather than creating satellite
teams was considered preferable.
-
Hoarding related fires affected people across all ages and social demographics.
-
Ongoing training, both private or public, was seen as essential for direct care workers, supervisors and
managers – something that could be tailored for specific central, regional and local multiple sector needs.
9.1.2
-
-
Resourcing
Some saw the aged care sector, as a whole, as having well developed responses to hoarding, and saw a
gap in terms of support and funding available for people under 55 years of age.
Some local government EHOs, saw the cost of successive one-off cleanups as inhibiting, seeking means
to reclaim costs (for example, some local governments can claim as a debt against the value of the
persons property, where that property is privately owned, recouping when the property is sold).
Some programs stated allocating human resources for the long haul to hoarding cases was difficult,
either due to program policy constraints or that it significantly impacted on the capacity to support other
clients.
9.1.3
Client support
-
Linking clients into clinical therapy or treatment was often seen as difficult due to service system
restraints and prioritisation criteria, in addition to clients being reluctant to engage, particularly if they
were homeless or had multiple and complex needs.
-
People from all age groups, in a range of living conditions, social and demographic areas, economic
status, working or not, can have these health conditions, in a continuum anywhere from low to high.
-
The impact of hoarding on children must be factored in; many initiatives reported that children living in
hoarding households was quite common.
-
At times hoarding issues become apparent when people, often of an older age, are hospitalised with
consequent rehabilitative assessment for their return home reveals hoarding. ‘Holding’ individuals in
hospitals until cleaning can be arranged may clog a hospital bed and resources, as often the issue is
discovered at an advanced stage where there are decades of accumulated goods.
-
Hoarding behaviours are often identified among people with a disability when they move from supported
group homes to independent living, revealing that living skills development is a key area of need.
-
Intellectual disability and autism spectrum disorders have some correlation with hoarding or living skills
development.
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-
Drug and alcohol, mental health, agoraphobia and long standing issues around living skills development
all seemed to play a part when hoarding behaviours were present with the Indigenous client group.
-
A heightened sense of secretiveness and fear of involvement with services are experienced by the
Indigenous client group. A history of impingement on rights and value judgement have to be considered
in tailoring interventions or support for this group.
-
Family members who are carers living in the same house, or in their own house need support.
-
Clinical treatment and counselling are only suitable for a certain type of client.
9.2
Strengths
Currently in Victoria, practice and clinical response to hoarding and squalor is ‘home grown’ rather than led
by an agreed shared strategy or framework. However that being the case, many multiple services are
responding in a consistent way with regard to basic principles; understanding complexity and seeing the
behaviour as a health condition. This may well be due to the engagement, support and advocacy of
Dr
Mogan, Prof Kyrios, Dr MacFarlane and MFB as well as the effort of a broad range of other professionals
(refer Appendix 12).
This section identifies some common themes from existing practice emerging across Victoria.
9.2.1
Capacity to respond
-
Staff support - many providers stated the importance of building positive reinforcement, appropriate
external supervision and peer support structures to adequately build and maintain capacity for staff
involved in responding to these cases.
-
OoH services have taken steps (refer Section 8.2.6) to address hoarding and collect data.
-
The Victorian guidelines for psychiatric disability rehabilitation and support service (PDRSS) clearly state
that target eligibility is for people who have a psychiatric disability as a result of a serious mental illness.
Serious mental illness needs to be diagnosed; the overall program directions are to work ever more
closely with clinical services and to have joint clients.
-
PHaMS programs are also well positioned to respond, though as a national program, not all have
hoarding on their priority listing.
-
HACC contributes at a local level in a variety of ways, working with other sectors including other council
services such as EHO, Local Laws and Animal Investigation officers, particularly in rural and regional
Victoria. In metropolitan Melbourne the Royal District Nursing Service is often engaged with the family in
the home, where other services have cited OHS as an obstacle
-
A flexible relationship with local ACAS providers was seen as helpful, characterised by being adaptive to
the client’s needs, including pro-active engagement and lateral thinking around gaining consent. This is
commonly difficult with this client group due to secretiveness associated with the condition.
-
Agencies which are funded to provide or have access to community aged care packages are seen as
extremely useful due to their flexible nature, to respond to hoarding interventions (when the person is
assessed as program eligible), although the package amount was often insufficient.
-
Some agencies have access to home maintenance teams within their own organisations and this assists
in building an appropriate approach capable of doing slow or regular cleaning sensitive to the trauma of
disposal
-
HARP (depending on purpose of the discreet HARP program), will take referrals without consent.
-
Community agencies could use the ECCS tool as part of their internal referral processes, for example,
when a room reaches level 6, one agency could decide they need to partner with one or two other
agencies (depending on the assessed need), to enable continued work with that client.
-
Some Public Housing programs use the ECCS which provides a system that is unbiased and can be
drawn upon reliably, providing case consistency, identifying if someone is at risk and what level of risk
that might be. Public Housing considers level 7 – 9 as fairly high risk which informs the approach the
organisation would take with the client.
-
A hoarding training needs analysis survey was developed in Melbourne’s North West metropolitan region
to ascertain the training needs of staff working with people with hoarding behaviours. It was undertaken
by the Team Leaders from PHaM (Merri Community Health), TRAAC (St Vincent’s Health) and
Community Housing and Support: Northern/City (Wintringham), refer Appendix 17).
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9.3
Weaknesses
Due to the fact that such a broad range of sectors respond, either in isolation or together, to hoarding and
squalor situations, many involved are able to identify weaknesses, gaps and issues.
9.3.1
-
-
-
The need for best practice
Service response capacity and coordination are inconsistent between and within regions and in
metropolitan, rural and regional geographic areas.
Due to preparedness of some organisations to lead and respond to hoarding cases in a number of
regions, a regional service system culture can develop to refer cases to those organisations rather than
broaden regional capacity to respond or contribute. Staff from these ‘lead’ agencies have stated they see
their evolved role as unsustainable. They suggest a response must be multi sector and multi disciplined,
to enable the provision of an appropriate service response.
At times difficulties are experienced with general practitioners appropriately identifying hoarding,
(although this may be difficult if the person is only seen in a clinical environment),
Engaging clinical support is at times difficult. AMHS may not accept referrals as there is no clinical
diagnosis for hoarding and a hoarding condition is often seen as a behavioral problem.
HACC providers and others, often cite OHS restrictions as a reason for not being able to engage with
clients in the home.
The capacity of HACC and other services to respond is influenced by OHS issues and the responsibility
of employers to ensure staff safety (refer 10.2.1).
-
Insufficient available resources may compound capacity to be able to work at the depth and for the
timeframe required to make a long term impact on outcomes for this client group
-
Some (for example, police, by laws and others) would often like to see a quick fix, which is not possible
-
Office of Housing workers can feel pressure to take action, such as full scale industrial cleaning in
response to neighbourhood and council complaints and to reduce fire risk.
-
Individual consent (refer 6.2.1, 6.2.2) is a key issue before HACC and ACAS services can become
involved. This requires more discussion and it can be hard to get an ACAS assessment due to the
difficulty gaining consent from clients.
-
Local Council EHOs may experience limitations in terms of only being able to respond to hoarding when
a complaint is made; action prior to this might make for a more cooperative response and outcome.
9.3.2
-
-
Some pressure points
Opportunity shops and council hard rubbish collections play an unknowing role in resourcing hoarding,
exploring options for minimising could be beneficial.
Long term service provision and access to specialist practitioners is an issue, many services are unable
to provide such service provision for great lengths of time.
-
If agencies do not have access to home maintenance, success is dependant on localised relationships
with public and appropriate private cleaning companies.
-
Full scale industrial cleans can have a role to play, but only if follow up support by funded service
providers is implemented.
Ongoing case management for any age is seen as integral to success, but hoarding is often hard to ‘fit’
within existing service delivery models.
-
For the homeless person with a hoarding condition, options for storing their items are extremely limited,
often having to condense their whole lives into one room or space.
-
Linking Transitional Housing Management (THM), Rooming House and Crisis Accommodation providers
into the hoarding discussion is important as they experience hoarding in their properties. Improved
communication or handover between these services and OoH may minimise the behaviour snowballing
upon entry into long term housing.
-
Building an evidence base around hoarding needs to be defined and undertaken.
-
Older adults who hoard may have multiple, chronic health conditions, but home care services may be
denied to the person until the hoarding is resolved.
-
Prescription and non-prescription medicines can be buried under mounds of paper or clutter, making
them hard to find, which could mean health conditions being treated with prescribed medications,
resulting in undesirable outcomes.
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-
A health condition such as asthma for example, could become exacerbated by dust and mould; equally
bacteria found in environments carrying mould and vermin could contribute in a variety of ways to ill
health, particularly over time.
-
Working with a person of any age living in a private property is more difficult than working in a rental or
public property, as there is far less regulation and impetus for change.
9.3.3
-
Education required
The capacity of all service providers needs to be strengthened (no matter which sector or discipline), do
that they are aware of respective roles and responsibilities when responding to cases of hoarding and
squalor.
Consider the development of a Victorian hoarding and squalor education and resource website providing
appropriate material, links and best practice examples. Maintenance and resourcing of the website would
need to be addressed.
Responding to hoarding and squalor has a stigma of being difficult dirty and work. It is important to
recognise that success is possible to experience with clients, occurring fairly quickly once trust and
rapport has been established.
-
There is a lack of awareness and/or understanding of the determinants of hoarding and squalor, the
aetiology of hoarding behaviour is multi-factorial and rarely with clear causation, often present are longstanding mental health issues, which may be undiagnosed or unsuccessfully managed
-
Clients are often socially isolated, with poor family and social support and rarely have advocates to assist
them, which effects the style of engagement required.
9.3.4
Hoarding or squalor issues when identified during the course of or
following hospital admission
-
Clinicians in a hospital setting are often not equipped to adequately manage short to medium term
discharge planning for this client group. The primary reason for this may be limited community resources
to work at the intensity required to resolve long-standing patterns of hoarding behaviour
-
Clients who consent to participate need advocacy and intensive case management, as well as
coordinated care to address possible medical and mental health issues on a long term basis. Existing
commonwealth funded aged care packages (CACP, EACH, EACHD) or HACC services (that is,
Linkages) are not sufficient to sustain the functional assistance or the case management that this client
group requires.
-
ACAS frequently receives referrals for these clients often earmarked as urgent by referrers, for what are
very long standing issues. Local councils are similarly limited in their capacity to adequately meet this
group’s need on both a short and long term basis.
-
In extreme cases there may be need to temporarily relocate the client from their residence to enable a
major clean-up or essential structural works to make their home habitable. In such cases, access to
temporary accommodation can be significantly limited and requires consideration in a comprehensive
service response.
-
Identification of hoarding behaviour or squalid living conditions may also trigger referrals within the health
service for a competency assessment and possible appointment of a guardian, resulting in protracted
inpatient stays.
Page 57 of 131
10 Future policy and service response
considerations
Tackling social issues that are not confined to a discrete area, but are socially and geographically
widespread, requires planning and supportive systems to underpin and strengthen any particular local
service model or approach. Such systems are comprised of authorising common frameworks and locally
137
based community organisational structures and processes.
10.1
Service response
10.1.1 Current
Victoria has no overall strategy or framework to address or support people with hoarding behaviours or who
are living in squalid environments. As a result, service response across sectors to such cases is piecemeal
and inconsistent with limited capacity to identify and appropriately assess cases, including risk.
Understanding hoarding behaviour, its diagnosis and what constitutes an appropriate service response is at
an early stage of development, for example:
•
A response clearly involves multiple sectors and disciplines, some of which have similar cultures and
working practices; others in their day to day practice have very little to do with each other.
•
Different programs and sectors are responding in the following ways:
- Department of Human Services: Housing and Community Building (SfHRT) program has strengthened
their response to complex needs clients who hoard, by establishing service coordination positions in
regions, providing templates, tools and training opportunities for their staff and other sectors (refer
Section 8.2.6)
- Department of Health: The Environmental Health Unit is currently developing guidance material for
local government environmental health officers on how to deal with hoarding as a mental health
condition rather than one that usually responds well to a regulatory action in the first instance.
- Department of Health: Aged Care Branch has committed resources to develop this paper.
- Municipal Association of Victoria (MAV): In October 2011, the state council of the MAV resolved that
the MAV ask the Victorian Government to investigate the extent and impact of hoarding across
Victorian local governments with a view to developing a collaborative framework to address this
burgeoning issue.
- Metropolitan Fire Brigade continues to advocate and present at hoarding forums, sponsor studies on
at-risk groups and educate on how to enhance fire safety.
- Country Fire Authority is undertaking a hoarding prevalence study in rural Victoria.
- Department of Primary Industries: Bureau of Animal Welfare has developed a Victorian Animal
Hoarding Advisory Group, now with two working groups (Data collection and Operational), and has
undertaken two research projects.
- A number of cross sector sub regional hoarding working groups meet (refer Appendix 12).
•
There are some common links between the above initiatives, apart from the fact that they are occurring in
discreet sectors or program areas. None of these initiatives will be as effective as they could be if they
exist in isolation from each other. Many initiatives may repeat similar information but with a different
orientation and application, however, there will be no comprehensive outcomes to impact on all the
sectors involved.
•
Local service providers from a range of sectors will embrace information or solutions that are promoted
and look to find a fit for themselves. Currently access to information regarding hoarding and squalor is ad
hoc and not systemised.
•
Some Commonwealth government programs and private businesses are also part of local current service
response (refer Sections 8.2 and 8.3).
137 Victorian DHS Support for High-Risk Tenancies Final Report October 2006- Extract P29
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10.1.2 Challenges
Given the fact that multiple sectors and disciplines from Commonwealth, state and local government
programs respond to cases of hoarding or squalor, service response frameworks vary, for example:
•
DH/DHS – operate from a similar client intention model, that is client centred care, such as the One DHS
service model. For this complex condition which requires a multiple agency response, questions arise
such as – how do different government department service frameworks work together in a multi
government department response?
•
Service providers work together to produce a result within, and at times despite policy or service model
differences – programs have different purposes (for example, regulatory, clinical, in the home or out of
the home) and consequently different cultures and approaches to working with people.
•
Previous common working arrangements between programs change in response to government
direction. Sometimes this leads to the creation of different tools and approaches being developed
separately, and these could benefit other sectors (for example, the Service Coordination Tool Templates,
which are not used by Housing, but have much appeal for them). Should a multi government department
response framework be developed to address hoarding and squalor?
•
Some providers experience reluctance from mental health services to see the hoarding issue as part of
their inherent territory. This may relate to concern about an expectation that 'the problem' might be
directed their way, and require staff to undertake assessments, and a tendency for squalor where it
occurs in the setting of, for example schizophrenia, to be viewed by AMHSs as an unrelated problem
rather than a related phenomenon.
•
Difficulty accessing an appropriately skilled assessor even when AMHSs agree to conduct an
assessment. Ideally, these presentations require a neuropsychological assessment and difficulties can
arise from squalor lying at an uncomfortable boundary between psychiatry, neurology or behavioural
sciences.
•
The fact that management often comes down to social or environmental changes rather than a
'treatment' to be prescribed, as such. This results in social services or non government organisations and
council services being the defacto case managers for what are really very complex care issues.
•
The reluctance of some services to become involved, refusing to assist on health and safety grounds –
‘too dirty to allow us to go in and clean it up’. Further work is needed to explore when a hoarding or
squalor property is seen as a health and safety risk, leading to a refusal to enter or engage. If so, how
can this position be worked into a service response to hoarding (refer 10.2.1).
•
The language of 'rights' and competence to refuse assessment being invoked may well avoid a
responsibility to provide such people with desperately needed assistance.
•
An assumption of competence in people whose living circumstances are objectively squalid is flawed,
circular, unproductive and self-defeating in terms of conducting necessary interventions.
10.2
Public policy
10.2.1 Strategies
Given that a large number of community, agency, family and individual resources are brought to bear on
cases of hoarding, it is critically important that those who encounter hoarding respond thoughtfully and
strategically.
A boutique approach is not what is required in this instance. Instead a coordinated response that maximises
resources across clinical and practical community based agencies is likely to achieve the best possible result
for the person who hoards or lives in squalor, as well as those affected by the problem.
A best practice response should be explored and made up of:
•
A strategic approach that builds service system capacity by broadening sector understanding and
awareness, as well as an expectation to contribute, thereby removing reliance on a small number of
regional agencies.
•
A collaborative government response including key stakeholders (refer Section 8.2) that would:
- develop a common response framework for multiple agency and sector use
- develop government guidelines for cross sector use (including: client centred principles or practice,
definitions, common language, discreet roles, risk assessment, monitoring progress, resource links and
contact points for treatment if required).
•
Determine and adapt appropriate assessment tools based on those already available (refer Section 7).
Page 59 of 131
•
Provide cross sector training to encourage appropriate service response that emphasises a coordinated
service response, but builds in flexibility on a case by case basis.
•
Support groups and behavioural change programs for hoarders to assist them to change their
behaviours, as well as carers or family members (including children), to support them to understand the
condition and to be able to better sustain their own lives.
•
Create respective services roadmaps for people with hoarding behaviours and their families, service
providers and landlords so that people know which agencies to contact in different situations and have a
way to identify and seek assistance.
The establishment of agreed service system supports such as:
•
a local, regional interagency service coordinating point (not referral) that would plan referral, assessment
and coordinated service responses
•
a guide to networking locally with other service systems, formally and informally, including information
sharing
•
consent is a key issue before HACC and ACAS services can become involved and this requires greater
discussion
•
the capacity of HACC and other services to respond is influenced by OHS issues and the responsibility of
employers to ensure staff safety. There needs to be a fuller discussion with the MAV about OHS issues
in relation to the capacity to respond to squalor and hoarding and to psychological and health issues.
•
organised and agreed assessment, referral and intervention protocols and processes – including a
stronger focus on treatment and intervention services for joint work
•
flexible service delivery model options, for example, outreach, secondary consultation, on-site
•
development by AMHSs of agreed local protocols with the relevant LGAs, NGOs and community based
services around the assessment or management of cases
•
specific funding to allow neuropsychological assessments to be accessed for these cases
•
a clear statement from the Department of Health about whether a presentation of squalor would, in and
of itself, be considered sufficient evidence of ‘risk’ and of ‘appearing to suffer from a mental disorder' to
at least permit a period of evaluation under the MHA.
(Note January 2011: The Office of Chief Psychiatrist has confirmed that a squalor presentation would not
in and of itself be considered reason to hold someone involuntarily under the Mental Health Act unless
they also appeared to be suffering from a serious mental illness and were a danger to themselves or
others and no other less restrictive treatment option was appropriate.)
If a squalor presentation also appeared to be mentally ill, they can be referred for an assessment to
specialist mental health services where the strict criteria of the Mental Health Act apply, that is, are they a
danger to themselves or others; are there less restrictive or more appropriate options for treatment etc.
The above comments would also apply to compulsive hoarding. While it might be recognised as a mental
health 'condition', the Mental Health Act only applies where there is an immediate danger to the person
or others etc. A useful analogy to explain further might be depression. While this is a mental health
condition, just because a person has depression does not mean they would be subject to the mental
health act).
10.2.2 Effective intervention
Generally people with a hoarding condition or living in a squalid environment have ‘fallen through the gaps’ of
mainstream health, mental health and community-based services. Establishing guidelines that are too rigid
would be counter-productive, such guidelines would need to encourage flexibility due to the nature of the
hoarding condition and the consequent need for an individualised approach.
Practical
More often than not, several areas of a hoarder’s life are affected. Effective intervention requires
professionals working together in the same direction and at the same pace, meeting legal and ethical
requirements while also ensuring the current and future health and safety of the person who hoards and
affected others.
Hoarding can pose a number of associated problems in a person's life which may involve laws, policies and
requirements in areas as diverse as sanitation, safety, mental health, physical health, animal protection and
others.
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In addition to public and government involvement, often specialist private services such as visiting nurses,
psychiatrists, counsellors, occupational therapists, professional organisers and cleaning companies may be
employed to assist.
A planned, coordinated response between agencies not only enables access or provides a means of getting
into a person’s home, but also establishes an approach to build progressive support for those with a serious
138
hoarding condition.
In many instances of hoarding or severe domestic squalor, a clean up of the property exposes structural
damage and the cost of repairs can be considerable. Ongoing support and building maintenance can be
costly and many people living in severe domestic squalor cannot afford to undertake property repairs.
Many incidents of squalor involving poor living conditions have been resolved successfully. Discussions with
people involved in dealing with poor living conditions indicate that a key to success is organisations
committed to working together.
With people increasingly living on their own, incidents of squalor will continue to occur and money alone will
not resolve such occurrences. The need to identify and build good relationships with other service providers
is essential, as is the person reporting the incident and most importantly the person living in squalor.
Dealing with poor living conditions does not begin or end with the ‘clean up’ and satisfied neighbours. Good
relationships with people who are at risk or actually living in poor conditions need to be built and maintained
after the intervention and be based on compassion, respect and understanding.
Good linkages and relationships must be built with a range of community and media organisations so that
people in the general community know how to respond appropriately to people living in hoarding or squalor.
Clinical
When the outcome of DSM-5 is known (April 2013), a flow on effect should assist with building capacity in
professional fields such as mental health in general, psychiatry, social work and the medical profession.
However, in the mean time there appears to be a deficit in capacity or lack of preparedness in some clinical
professions to respond actively and appropriately to hoarding cases. This is more than likely due to the
current level of clinical understanding and more than anything else, the definition of the condition. Effectively
diagnosing and treating a hoarding condition is at such an early stage of development, even though as stated
earlier hoarding and its symptoms have existed for generations all around the world.
Services involved in providing a practical service response are seeking clinical support options for not only
the people they work with, but for themselves, in order to understand how best to respond. Access to support
from either public or private practitioners is limited, particularly in regional and rural Victoria.
Costs (property, clean ups and human resources)
The cost of cleaning up a property can be excessive, especially if the property or problem has not been
addressed early. Intensive cleaning can cost up to $2000 dollars a day and sometimes requires having at
139
least six workers from different community and government organisations involved in the case.
The cost of case management or service coordination and community support needs to be factored in as this
is often underestimated.
In other states, funding provided by government has also assisted community agencies to fund some of the
initial clean up work. There are many examples of different levels of government and community
organisations combining resources.
10.2.3 Hoarding task forces
140
In the USA there were some 50 taskforces established to address compulsive hoarding, although more
than one third no longer function. The purpose and function of each taskforce varied, some building
community level understanding and response to compulsive hoarding and/or squalor, others involving diverse
agencies to address interdisciplinary and inter-agency coordination. For example in 2003, an interdisciplinary
New York City Hoarding Task Force convened to address the hoarding disorder in older adults and to
138 Refer: Bratiotis, C., Schmalisch, C., & Steketee, G. (May, 2011). The hoarding handbook: A guide for human service professionals. New York: Oxford University Press
139 Taylor (2007)
140 Extract Beyond Overwhelmed… Appendix F. U.S. Task Forces on Compulsive Hoar ding – Building Community-Level Responses
Page 61 of 131
develop practical tools and resources for community service providers (refer Appendix 4: New York City Checklist).
How task forces in general are formed, organised, and maintained varies greatly. Some task forces form for a
specific purpose, such as hosting a hoarding conference or providing support groups for discreet groups and
their families. Others develop to achieve set goals and commit to a specific timeline for meeting those goals.
Some smaller communities choose a within-agency task force model, which would be appropriate for larger
organisations for a shorter time, for example a local government prioritising something like hoarding, as a
problem that required a coordinated response from police, fire, public health, social work and inspection
141
departments.
The SA Department of Health indicated that while a formal hoarding task force might benefit South Australia,
an agreed interagency approach can achieve the same results.
NSW (DADHC) produced some guidance material (refer Appendix 5: Examples of national service response:
Section 3.1) to assist agencies with regard to severe domestic squalor, not hoarding (except for where the
two conditions overlap).
In Victoria some stakeholders suggest a state-wide taskforce is required to address a range of concerns
including: building service system capacity, consolidating knowledge and providing policy direction for a
multiple sector response. This would reduce the current repetitive, cyclic effort within sectors, which
duplicates resources and effort, and at times inappropriate service response.
141 Hoarding Task Forces - International OCD Foundation (IOCDF) - Hoarding Centre, Christiana Bratiotis, PhD. Boston University
Page 62 of 131
11 Conclusion
Self-neglect generally is a classic example of a human problem which falls into that grey area between
142
health, social work, housing services and environmental spheres of influence. Hoarding is a problem that
requires intensive, lengthy, costly and complex responses.
Most local communities have agencies staffed by professions from various disciplines that are likely to
respond to cases of hoarding or squalor. Respective professions may become involved for somewhat
different reasons, but the underlying intention is the same — to protect the health and safety of the individual
concerned.
Addressing the issue rather than the impact, through interagency effort and cooperation (such as networking
and protocol development) is what works best. Strategic decisions that enable shared consistent guidance,
responsibility, interventions, sustained results, empowered engagement and the education of multiple
sectors, would strengthen appropriate service response.
Victoria would benefit from an agreed common service response framework – one that encompasses multiple
sectors, disciplines and legal jurisdictions, one that addresses components such as:
•
connecting existing sectors at a local level
•
identifying a central lead coordinating point in each region; one that has capacity to provide a complex
care coordination role
•
development of guidance material applicable to all sectors and disciplines encompassing how clinical
and practical service response should interact locally and regionally
•
costs for practical and clinical service response and sustainability
•
data collection that would add value (by whom, which program/s and for what purpose)
•
the provision of common and consistent education for managers and direct service workers (both clinical
and practical) across all sectors.
What next?
This discussion paper will be distributed to appropriate government departments and key stakeholders for
comment and contribution, which will aid in determining what actions might be required, particularly regarding
the need to develop a common framework.
142 Lauder, et al, 2005.
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Appendix 1:
Client Case studies
a) A case of compulsive hoarding syndrome without OCD
‘Ms S’ was a single, 51-year-old secretary. She reported that she had experienced difficulty discarding
items for as long as she could remember, although she never considered this behaviour to be
problematic. In recent years, she noticed that her three-bedroom flat started to become increasingly
cluttered. Despite her efforts to clear the clutter, she felt unable to discard most common items
(especially paperwork) because she believed that they might be useful in the future. She also started to
become more sentimentally attached to her possessions that served as a reminder of happier times
when she was married. She reported feeling ‘safer’ with these possessions. She managed to keep her
kitchen and bathroom relatively uncluttered, but her living room was cluttered to the degree that she
could no longer sit on the sofa and only had one chair on which to sit. She had not been able to invite
anyone to her home for two years because she was embarrassed.
Her hoarding behaviour had a major impact on her social life, and she became gradually depressed as a
consequence (with a Beck Depression Inventory score of 18). During the past year, Ms. S consulted
several mental health professionals who could not agree whether she had OCD. In fact, she did not
report any other obsession or compulsion other than hoarding. Additionally, she did not report any
obsessional thoughts or checking/repetitive behaviours associated with the hoarding. When she was
asked how she felt about her behaviour, she described her symptoms as being mainly egosyntonic, but
she decided to seek help once the clutter started to interfere with her life.
b) A case of compulsive hoarding as a symptom dimension of OCD
‘Ms P’ was a 48-year-old woman who was diagnosed with prototypical OCD at the age of 16. Her
symptoms included contamination fears and checking but not hoarding.
Four years ago, after experiencing a divorce, she began to feel very anxious when she had to discard
any item. This developed into a severe avoidance of discarding virtually every item that belonged to her,
which even extended to her body products such as nails, hair, and faeces.
She experienced overwhelming anxiety and feelings of incompleteness whenever she was asked to
discard these items. If she was forced to discard a specific item, she would examine the item for a long
period of time in an attempt to memorise the way it looked. Before going to sleep, she would then feel
compelled to recall every discarded item with as much detail as possible, as a way of ‘not losing it
forever’. Ms. P’s obsessional fears and hoarding behaviour controlled almost every aspect of her life and
were experienced as egodystonic.
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Appendix 2:
DSM5 Proposed diagnostic criteria
Hoarding is being considered for inclusion as a formal diagnosis by the American Psychiatric Association as
they prepare for publication of the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. This
table shows the proposed diagnostic criteria for Hoarding Disorder, which is the name that has been
proposed.
Table 1
Proposed DSM-5 criteria for Hoarding Disorder
A.
Persistent difficulty discarding or parting with possessions, regardless of the value
others may attribute to these possessions.*
B.
This difficulty is due to strong urges to save items and/or distress associated with
discarding.
C.
The symptoms result in the accumulation of a large number of possessions that fill up
and clutter active living areas of the home or workplace to the extent that their intended
use is no longer possible. If all living areas are uncluttered, it is only because of the
interventions of third parties (for example, family members, cleaners, authorities).
D.
The symptoms cause clinically significant distress or impairment in social, occupational,
or other important areas of functioning (including maintaining a safe environment for self
and others).
E.
The hoarding symptoms are not due to a general medical condition (for example, brain
injury, cerebrovascular disease).
F.
The hoarding symptoms are not restricted to the symptoms of another mental disorder
(for example, hoarding due to obsessions in Obsessive-Compulsive Disorder,
decreased energy in Major Depressive Disorder, delusions in Schizophrenia or another
Psychotic Disorder, cognitive deficits in Dementia, restricted interests in Autism
Spectrum Disorder, food storing in Prader-Willi Syndrome).
Specify if:
With excessive acquisition: If symptoms are accompanied by excessive collecting or
buying or stealing of items that are not needed or for which there is no available space.
Specify whether hoarding beliefs and behaviours are currently characterised by:
Good or fair insight: Recognises that hoarding-related beliefs and behaviours
(pertaining to difficulty discarding items, clutter, or excessive acquisition) are
problematic.
Poor insight: Mostly convinced that hoarding-related beliefs and behaviours (pertaining
to difficulty discarding items, clutter, or excessive acquisition) are not problematic
despite evidence to the contrary.
Absent insight: Completely convinced that hoarding-related beliefs and behaviours
(pertaining to difficulty discarding items, clutter, or excessive acquisition) are not
problematic despite evidence to the contrary.
* The Work Group is considering alternative wording: ‘Persistent difficulty discarding or parting with
possessions, regardless of their actual value’.
Page 65 of 131
Appendix 3:
Snapshot and commentary progressive cleanup of
kitchen in squalid condition
Photos and comments have been provided by a person managing their squalid living environment, in
this case, the kitchen.
Kitchen: As usual, I started by picking at bits and pieces, little by little... I think this keeps me from
getting overwhelmed at a big job, sort of desensitizes me a bit, and the job gradually gets its claws in
me, and then I jump in and finish it off. So, during the week, I picked up things here and there, and
filled a bag of trash. Then, that weekend, I got out the gloves and got it done.
Before
I spent literally an entire DAY washing dishes. The two sinks had been filled and abandoned about four
years ago. Dirty dishes that wouldn't fit there were left wherever in the house I had last used them, or
stacked in piles behind things, or in a big plastic tub. Tin pie plates and cheap utensils corroded into
dust in the sink, and left stains on the plates.
During
So, here is some of what I started with. This is NOT all of it. Underneath that box is a tub about 2.5 feet in
diameter and about 3 feet deep, which was also filled with dishes. See all the rusted silverware?
Since I currently have no gas for heat water, I heated two large pots of water on the electric stove, filled the
tub in the sink, and let the dishes soak while I heated another pot in order to be able to rinse the dishes with
hot water too. That process alone took about 30 minutes, and I had to repeat it for each new load of dishes
that fit in the little tub. Initially I had planned to wash the dishes in a big tub outside, but as I started to fill that
with hot water, I realized it had a major leak!!! So, I resorted to plan B.
Page 66 of 131
This was the sink after I cleared the dishes
out, after 4 years of sitting there. I was
amazed that I did NOT find any sink pudding!
(Meaning a consolidated solid mass of
decaying material).
After
And here is about half of the ‘after’ dishes. They are clean, but have some rust stains on the edges. I can live
with that until I get around to replacing them.
After having worked really, really hard on the kitchen, I treated myself to a nice, homemade dinner served on
real plates with real utensils, with a glass of Chardonnay in a real wine glass.
I have not used ONE paper plate or plastic fork since!!!
Extract Squalor Survivors website (www.squalorsurvivors.com)
Page 67 of 131
Appendix 4:
New York City Hoarding Task Force143
New York City Hoarding Task Force checklists:
(A)
General top 20 decluttering tips
1. Let go of ideal notions of cleanliness. Your client may value items that appear to you as worthless or be
rubbish. Parting with their belongings (even used paper cups) can cause severe emotional distress.
2. Listen to your client's ideas and plans for their belongings. Explore their hopes, both realistic and unrealistic,
and accommodate them if possible. Clients have been helped to donate or sell their belongings. One woman even
sent her ‘stuff’ to relatives in her home country.
3. Work at the client's pace if you can. Start with short periods of time. Some clients cannot tolerate even a half
hour in the beginning. Keep in mind, though, that a client's decluttering pace is usually slower than the eviction
process.
4. Partner with a legal group, home care or nursing agency to find out what level of cleanliness your client
needs to achieve in order to attain their goal, whether it is eviction prevention or home care services. You have to
meet certain standards, but you don't have to exceed them.
5. Focus on fall prevention. Create pathways free of debris, loose cords or slippery rugs. Some frail clients hold
onto furniture or other items while moving through the home; ask how your client gets around and preserve their
‘props’ until other assistive devices (canes, walkers) can be introduced.
6. Focus on fire prevention. Make sure your client has a smoke alarm and test it monthly. Red flags include
newspapers stored on top of or inside a gas stove or near working radiators. Help relocate their belongings from a
hazardous area to a safe place.
7. Be creative and negotiate. Perhaps the client can keep the previous year's copy of a particular magazine, but
throw away the prior twenty years' collection. Consider photographing belongings, as this may help the client part with
them and preserve memories.
8. Begin by reorganising, if time allows. Start with a small corner of a room, a single table, or just a section of the
table.
9. Ask your client what they would like to do that currently they cannot do because of the clutter. For
example, ‘Would you like us to help you to figure out how you can cook again?’ or ‘How could you do this differently
so you can use the stove?’
10. Motivate your client by helping them be realistic. Some clients will declutter only if told they face eviction or
cannot be discharged home after a hospitalization. Gentle but firm pressure is appropriate if a client's home or health
is at stake.
11. Create a limited number of categories for belongings. Large plastic crates or wicker baskets can help
separate items into these categories.
12. Be resourceful in finding workers. Volunteers and other informal supports have been used with success, such
as hired high school students who pack up agreed upon donations.
13. Have a social worker present during a major cleanout, preferably one who already has a supportive
relationship with the client. Clean-outs can be overwhelming to people with severe hoarding behaviour. Have a backup plan in case emergency psychiatric services are needed.
14. Discuss how to safeguard valuables in the cleaning process. Have a written contract. Agree on what to do
with valuables that turn up, such as money, jewellery, checks, bonds, stock certificates, and collectibles.
15. Call the ASPCA (Note: Victorian reference - RSPCA) if you need help finding a temporary or permanent home
for pets while the cleanout is being conducted.
16. Consider relocating an individual to a new apartment if the clutter is the result of physical or mental frailty. A
new environment can provide a fresh start and enable the client to receive needed services sooner.
17. Encourage the client to participate even during a major cleanout. Get them involved so they can be part of the
process and have some level of control. Ask them if you can help find something they might be looking for, or give
them a box to help sort through.
143 City of New York Hoarding Task Force. Refer: http://www.cornellaging.org/gem/hoa_bes_pra.html?name1=Best+Practices+Decluttering+Tips&type1=2Active
Page 68 of 131
18. Plan for a carefully orchestrated clean-up which can result in decreased client anxiety. Make sure you make
arrangements:
•
•
•
•
with the building for entrance and egress when removing possessions and trash
for use of the elevators
for cost, rental and removal of dumpsters (Do not leave a dumpster or trash bags on the property after a
cleanout, even overnight)
for storage if needed, including cost of transportation to storage facility.
19. Communication is Vital. It is important for the client to communicate with the cleaning crew - making their
concerns known. If the crew doesn't speak the same language as the client, there should be a
supervisor/translator/advocate present so that the client can make his/her needs known and can feel as if he/she has
some control over the situation.
20. Plan for on-going maintenance and supervision to maintain a decluttered environment.
(B)
144
Working with individuals with dementia who rummage and hoard
People with dementia experience memory loss, mental confusion, disorientation, impaired judgment and
behavioural changes, which may include rummaging and hoarding. The following information may be helpful to you
when working with individuals who are experiencing these symptoms.
Rummaging
People with dementia may spend excessive amounts of time rummaging through their possessions. This may
happen because they are searching for items they have misplaced or hidden. Oftentimes, people with dementia
hide their possessions, forget where they have hidden them, and then blame others for stealing them.
Rummaging behaviour may also result from boredom as people with dementia find it difficult to initiate activities and
rely on others to keep them active. Quite often, redirecting individuals to activities that they enjoy, such as music,
gardening, and/or meal preparation, can help distract them from engaging in distressing behaviours. For individuals
in the later stages of dementia, certain repetitious activities, such as folding napkins or sorting coloured socks, can
satisfy the need to be active and engaged.
Hoarding
Some people will hoard or save numerous items, including dirty clothes, food, and papers. Keep in mind that
individuals with dementia are continuously losing parts of their lives. Losing a meaningful role in life, an income,
friends, family, and a good memory can have an impact on a person's need to hoard and or to ‘keep things safe’.
Hoarding in this population is oftentimes triggered by the fear of being robbed.
When working with persons who have dementia, it is essential to keep their safety in mind as they become
increasingly unable to protect themselves. Order, routine and simplicity are most helpful and a house or apartment
that is relatively uncluttered is the ideal environment.
Tips to consider
1.
Building trust – Any changes you make in the home of a person with dementia could cause the person to
become very anxious and agitated. It is essential, therefore, that you build a sense of trust between yourself and
your client before you attempt to make any changes at all.
2.
Focus on fire prevention – Check for papers stored on top of or inside a stove or microwave, and near
working radiators. Make certain your client has a working smoke alarm and arrange for someone to test it monthly.
3.
Focus on preventing poisonous ingestion – Be aware that people with dementia may not recognise that
some things are not good to eat. Keep potentially dangerous materials such as cleaning fluids, plant soil, lotions,
and medicines out of reach. Check the refrigerator on a regular basis to make sure that rotten food is thrown away.
4.
Focus on fall prevention – Make certain that pathways are clear and that there are no slippery rugs that
could cause falls. Keep in mind that some frail adults hold onto furniture while moving through the home. Observe
how your client gets around and make sure that these supports are stable.
144 Authors: Rosemary Bakker, MS, ASID. Weill Medical College of Cornell University and Paulette Michaud, LMSW. Manager, Education & Training, Alzheimer's Association, NYC Chapter
Page 69 of 131
5.
Minimise the number of hiding places by locking unused closets or doors Put signs that say ‘NO or
‘STOP’ on places that you want the person to stay out of. Note: This may not work for people who are advanced in
the illness.
6.
Limit the amount of valuables or cash that are within reach of the person with dementia.
7.
Keep the amount of junk mail to a minimum so the person has less to manage. If possible, arrange for
bills to be sent to some one else for payment.
8.
Remove non-essentials such as out of season clothing to lessen the amount of clutter. Remember,
however, that a person with dementia will experience increased anxiety if she/he believes that these possessions
have been stolen.
9.
Understand coping mechanisms – For example, some people with dementia keep their belongings,
including clothing, out in the open otherwise they forget where they have placed them. This coping mechanism,
with oversight by a caregiver, may help a person continue to function in the beginning or middle stages of the
disease. Other individuals may be willing to put their belongings away if large signs or labels, such as "Socks" or
"Blouses" help them identify the location of their possessions.
10.
Fill a drawer full of ‘odds and ends’ for the person to enjoy rummaging through.
11.
Check wastebaskets for ‘lost’ items before they are emptied.
12.
Provide support such as home care for on-going maintenance.
13.
Learn their hiding places – If a person hides things, learning where their favourite hiding places are will
help you locate their important items. Items are often put in the same places, such as under carpets or mattresses
and in shoes, handbags, coat pockets, or drawers.
14.
Keep duplicates of important items such as glasses, hearing aids, keys, etc. as back-up. Have the client's
doctor's name on hand if duplicate prescriptions need to be filled.
15.
Remove discarded items immediately – If you are removing items from your client's home, it is best to
remove them immediately from the premises or your client may rummage through the garbage and bring them back
into the house.
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Appendix 5:
1.
Examples of national service response
New Zealand
145
The NZ Ministry of Health (MOH) presents its experience from a population health perspective
indicating
that legislation such as the Public Health Amendment Act 1918 and the Health Act 1920 provide a basis for
removing people from places of squalor into institutions, should the case require it. The NZ Health Act 1956
also provides right of entry and inspection of any dwelling house, building, land, ship, or other premises.
MOH Population Health provided referral data to them for severe domestic squalor cases in Canterbury and
Otago:
Referrals
Cases
Canterbury
Otago
34
18
Annual
Cases
Rate per
100,000
5.7
1.8
1.1
1.0
Rate over
100,000 aged 65
+
7.5
6.9
Referral sources
Health professionals
Community
Other agencies
60%
25%
15%
Reason for referral
In need of care
State of the house
Others
54%
38%
8%
Once a referral is received, the MOH applies to the District Court for an Order to remove the person from the
environment of concern; the Judge may make an Order then the MOH may revoke the order if no longer
required. The person concerned may appeal to the Court.
The legal test is applied against each case which includes these considerations - is the person aged, infirm,
incurable or destitute and their current living environment for example, are they living in insanitary conditions
or without proper care and attention.
The following Legal Principles are applied when considering the above:
•
•
•
•
•
•
Onus of proof on applicant
Individual’s welfare is only concern
Situation at the time of the application
Adequacy of care and attention
Individual’s views not decisive
This individual in these circumstances.
MOH removes people from squalid environments for the following reasons:
•
•
•
•
Risk of personal harm
Risk from inadequate support at home
Risk to others
To manage anti social or at risk behaviour.
145 Holmes, John, Medical Officer of Health, Clinical Senior Lecturer, Dunedin. University of Otago. Medical Officer of Health and also a Clinical Senior Lecturer in the Department of Preventive and Social Medicine in
the Dunedin School of Medicine, University of Otago. He is currently on secondment to the Ministry but retains his teaching role. Section 126, Health Act 1956. New Zealand. 2009.
Page 71 of 131
2.
South Australia (SA)
2.1
SA Local Government Interventions using the Public and Environmental Health Act 1987146
A foot in the door project
The SA Department of Health (DH), Public Health (Environmental Services) ran an Insanitary Conditions
workshop (2006) for state and local government environmental health officers (EHO) who are authorised
under the Public and Environmental Health Act 1987, to promote proper standards of public and
environmental health within the state and each jurisdiction.
Local municipal councils are called to intervene in situations of severe domestic squalor (and squalor related
compulsive hoarding), primarily as a result of complaints about the condition of a property. Cases may be
deemed to constitute an insanitary condition which is defined as premises which:
•
•
•
•
•
gives rise to a risk to health
is so filthy or neglected that there is a risk of infestation by rodents or other pests
causes justified offence to the owner of any land in the vicinity
emits offensive materials or odours
for some other justified reason.
Should a premises be deemed unfit for human habitation by reason of an insanitary condition, the local
council can issue a Notice which orders the owner or person responsible for the insanitary condition, to take
necessary action to improve the condition of the premises. Notices are appealable to the District Court or the
Public and Environmental Health Council.
Interventions under the Act are often resource intensive and frequently produce sub-optimal outcomes or
unsustainable improvements in living conditions, meaning one-off industrial cleanouts of a premise do not
change the behaviour of the person residing there, so the situation repeats.
The Act establishes the Public and Environmental Health Council (the Council). Appeals to the Council result
in a full review of the case. The Council can dismiss the appeal, revoke or alter the Notice. The Council’s
decision can be appealed to the District Court.
In addition to serving as an appellate body, the Council has mandated responsibilities including:
•
•
•
Overseeing the administration of the Act
Reporting to the Minister on matters relating to public and environmental health
Initiating, carrying out or overseeing programmes and activities designed to improve or promote public
and environmental health.
A foot in the door project (2008)
Under the auspice of the Public and Environmental Health Council, the SA government commenced
developing locally based guidance material for EHO. Key stakeholders were from government and nongovernment agencies. This project aimed to:
•
promote appropriate administration of the Public and Environmental Health Act 1987 at the local
government level as it relates to severe domestic squalor and compulsive hoarding as it relates to a
squalor situation
•
achieve better outcomes for people living in severe domestic squalor and with compulsive hoarding
where there is a tangible public health dimension.
Research methodologies informing the guidance document were based on focus group interviews and
discussion sessions (qualitative), as well as surveying local councils and key stakeholder groups.
Investigations did not constitute a full study and results are indicative only.
Outcomes SA Local Government Survey 2004 – 2008 (SA Health 2009 Unpublished)
•
On average approximately 4-7 home visits and 16-25 hours of staff time are required in order to reach an
end point (usually a clean up).
146 United Care Wesley - Port Adelaide, Disability Advocacy Service, Obsessive Compulsive Support Services, Western Linkages, RSPCA, Environmental Health
Australia (SA Branch), Aging and Community Services SA & NT, SA Meals on Wheels, City of Onkaparinga, City of Mitcham, City of Playford, DFC – Housing SA, DFC
– Domiciliary Care SA, DFC – Child Protection, SA Metropolitan Fire Service, SA Guardianship Board, SA Office of the Public Advocate and SA Mental Health.
Page 72 of 131
•
Approximately 52.6 per cent of cases are resolved without the need for legal action, that is, they are
solved via negotiation and mediation. Where legal action was used approximately 55 per cent of cases
did not comply.
•
Clients were aged between 61-80 years in approximately 47 per cent of cases.
Figure 1: SA Local Government Environmental Health hoarding/squalor statistics 2004 -2008
This project and survey, was designed to address severe domestic squalor in particular and only included
compulsive hoarding where the two conditions overlapped, so the figures reflect that outcome, neither
domestic squalor nor discretely compulsive hoarding, they intertwine mixed with other conditions.
Qualitative feedback indicated a lack of knowledge about other sectors, but a strong willingness to do the
best they could when managing squalid living environments:
•
‘We resolve complaints without other agencies. We do not address mental health problems, but do take
them into account.’
•
‘In the absence of support and assistance by any other agencies, a Guardianship application was made
in relation to the ongoing case that has been dealt with since 2006. Many … community service agencies
have never been approached because we didn't know of them nor been informed of them.’
•
‘I will never forget that clean up day. I had mental health nurses present as you can not deny the client
from being there and the emotion was overwhelming. The woman was climbing into the skip bin and
removing matter that would appear to be rubbish to most but not her. I did not involve the police because
I understand what police presence has on many mentally ill people who are not a danger. This can have
a devastating effect. They are not criminals.’
•
‘… if the person has breached council laws …then it’s a legal issue regardless of intent or mental
wellness. All the health field can do is….present to a GP for assessment and diagnosis and referral on to
specialists for further treatment and care. But really if the council reckon that counselling and therapy is
going to solve their squalor problems then they’re going to be sadly mistaken...’ SA GP
The Project aims to produce a Risk assessment tool (based on ECCS
147
) divided into 4 sections:
1. Is there evidence of compulsive hoarding or domestic squalor?
2. Does the condition of the dwelling impact on the health of those who live inside?
3. Does the condition of the dwelling impact on the public’s health?
4. Other issues for consideration as well as Pathways for managing interventions for EHO.
The SA DH indicated that while a formal hoarding ‘task force’ would be great, an agreed interagency
approach can achieve the same results without the need for significant resources. Their next immediate
steps were to:
147 Halliday, G., Snowdon, J.,
Page 73 of 131
•
•
2.2
complete new legislation, hopefully in late 2011, that would assist local government public health officers
to better respond to squalor environments, that is the South Australian Public Health Bill 2009 and the
South Australian Mental Health Act 2009
complete the guidance documentation including the risk assessment checklist completion (expected late
2011), which might well be useful for other sectors apart from EHO.
SA Royal District Nursing Service (RDNS) project
148
The SA RDNS conducted a small research project
•
•
•
•
•
•
(2007) to:
develop an understanding of the strategies and decision-making processes that nurses use when
providing care to clients living in domestic squalor
describe the ways nurses assess this client group
identify the decision-making processes nurses use to inform their nursing care so that it is effective
understand the assumptions used to distinguish between self-neglect, hoarding and squalor
explore the organisational structures that assist and impede care giving
understand the impacts of caring for this challenging client population, on the nurse.
The research methodology utilised qualitative biographical design, 20 community nurses who had experience
in working with people living in domestic squalor and a comprehensive literature review. The findings of the
project were:
•
•
•
•
•
•
defined and described squalor, hoarding and self neglect
indicators of squalor
assessment of people living in squalor
interventions and how to discuss squalor with people
the impact of squalor on care giving
organisational processes.
The project carried limitations such as small sample size; one organisation/one location; no client perspective
and rural and remote conditions were not considered. Implications for practice included:
•
•
•
•
•
•
•
•
person centred practice
client types are quiet different for compulsive hoarding and squalor living conditions
non judgemental approach
relationship development
assessment skills
develop expertise in complex behaviours
communication between health services
multi-service and inter-agency protocols.
Next steps included Inter-agency inter-disciplinary collaboration and seeking research funding to undertake a
larger study involving clients.
2.3
149
SA Flinders University: ‘Stuff’, ‘Mess’ and ‘Hoarding’: a maze of language and law
Flinders Institute for Housing, Urban and Regional Research explored squalor as a legal concept, discussing
the realities around individual rights and legalities and the extreme messiness where cohabitation and
varying living standards exist side by side presenting conflicting pressures (for example, liability;
ombudsman, treasury and the media).
The point made is that social policy undertaken within a human rights framework ensures that:
•
The primary principle of intervening in an individual's life is respect for that individual's autonomy and self
determination, ensuring the right of individual choice is paramount, placing the responsibility on the
individual to understand and accept the consequences of the choices they make.
•
A secondary principle of equal importance is the right of individuals to live in the community free from
exploitation and harm, which places the responsibility on the community to ensure that policies are
developed ensuring that options to live free from harm are available.
148 SA RDNS presentation http://www.nationalsqualorconference.com.au/files/presentations/How%20do%20community%20nurses%20care%20for%20people%20living%20in%20domestic%20squalor%20%20Dr%20Debbie%20Kralik.pdf
149 Michele Slatter, Associate Professor of Law. Flinders Institute for Housing, Urban and Regional Environments. Flinders University. S.A.
Page 74 of 131
The right of respect of individual choice is only available to individuals who are able to make choices between
a range of options available and often marginalised and disenfranchised individuals are not able to exercise
this right if they lack options. Public housing and tenancy perspectives were discussed where examples of
resolution were presented, which were not based on threats of eviction.
Flinders University suggested managing compulsive hoarding will be an issue for the 21st Century. The
question is how and when to intervene. When developing a social development model of intervention, legal
remedies have their place and are often found in existing Acts such as the Mental Health Act, the Health
Services Act and local government regulations.
2.4
Ethics and decision making - a domiciliary care SA training initiative for staff working in
complex home environments
Domiciliary Care South Australia (DCSA), a large SA organisation provides a range of community based
assessment and direct care services for older people across metropolitan Adelaide. They recognise DCSA
staff work in complex home environments including squalor/hoarding/neglect/clutter situations.
Some experienced DCSA Social Workers drew on their experience and practice wisdom to decide how to
extend and develop their knowledge in responding to such cases, as well as remaining dynamic locally. A
project was initiated (2009) looking at how best to train and support staff working in this area. The project
involved their Personal Support staff as well as listening to and promoting the voices of clients. A video
'Everyone Deserves a Chance' , was developed to convey key themes and is a core component of the
training workshops which point out how effective work in this area can lead to a range of benefits.
The training package recognises and promotes the value, knowledge and skills already used by staff in
preference to deferring to expert knowledge or ‘solutions’, which reflects DCSA’s endeavour to remain client
centred and to look beyond labels to the stories and life struggles of the people they work with.
2.5
New counselling service – before the end of 2011
Chronic hoarding of disused possessions and animals is a big problem for councils. A SA Health survey
showed "squalor-related" complaints to councils rose from 124 in 2004 to 642 in 2008.
Hoarders in SA who litter their homes with junk will receive free counselling to avoid council clean-ups. The
approach aims to assist the estimated seven in ten suburban hoarders thought to be suffering from
obsessive-compulsive disorder or other mental health problems. The SA Public and Environmental Health
Council is co-ordinating the service based on a NSW idea which seeks to break the cycle of council clean-up
orders and mass dumping of people's possessions.
The SA Health Director of Health Protection said (January 2011) that this new approach would tackle the
causes and the symptoms and should be in place before the end of the year, and would include mental
health and welfare agencies such as UnitingCare Wesley, Anglicare and the RSPCA.
3.
New South Wales (NSW)
The service response and intervention effort in NSW seems to focus on squalor and aspect of squalor that
includes hoarding conditions.
3.1
NSW Department of Ageing, Disability and Home Care (DADHC)
In 2002-2003 concerns were raised by representatives from NSW DADHC, the NSW Department of Housing,
local councils, community health nurses and other organisations which provide support to older people in
their homes, about an increasing number of people living in squalor in the eastern suburbs of Sydney.
During 2004 DADHC funded a review of services provided to this target group, aiming to develop guidelines
particularly for staff providing Home and Community Care (HACC) services that were intervening in such
cases, more than likely on an ad hoc basis.
Some service providers’ became frustrated with the lack of a coordinated response, resulting in a meeting of
staff from various community organisations in Sydney (2005) that aimed to develop guidelines to better work
with people living in severe domestic squalor. An initiative of the (then) Partnerships Against Homelessness
(PAH) Committee, the project was auspiced by Central Sydney Area Health Service (now the Sydney South
150
West Area Health Service) and was coordinated initially by a Reference Group with experience in assisting
people who live in squalor.
150 Reference group representation: Psycho-geriatricians: Health Services; Community Services Worker/Clinician: Alcohol and Drug service; Risk Management, Fire Brigade; RSPCA; Community Worker for Older
People: Municipal Council; Shared Accommodation Officer, Sydney Municipal Council; Aboriginal Liaison & Senior Client Service Officer, NSW Department of Housing; Disability Advisory Service, Protective
Page 75 of 131
151
152
Professor John Snowdon, a psychiatrist was appointed Chairperson and a consultant was recruited to
conduct a review of the evidence relevant to squalor, to consult stakeholder groups and to write a report on
153
which the Guidelines “Partnership against Homelessness” was developed, including the term severe
domestic squalor; extreme household uncleanliness, and hoarding (only where the accumulation of material
led to the environment being unclean, unsanitary or dangerous for example, fire risk).
These guidelines assist staff of various government and non-government agencies to constructively intervene
154
and improve the lives of people living in severe domestic squalor, as well as to improve the efficiency,
speed of action and coordination of work between relevant agencies across multiple health and community
bases sectors, providing them with:
•
•
•
•
•
•
a step-by-step framework (that is, the initial visit, interagency cooperation, referral to other service
providers, strategies to assist people unwilling to accept assistance and/or with impaired decision making
capacity)
simplified procedures to assist people living in domestic squalor (refer Attachment 1: Flowchart 1)
practical information regarding referrals and intervention options (refer Attachment 2: Flowchart 2)
clear roles and responsibilities of agencies and service providers to improve coordination and integration
of services (refer Attachment 3: Impact of Squalor checklist)
occupational Health and Safety checklist (refer Attachment 4)
a series of case studies explaining the issues and current events arising in typical cases of severe
domestic squalor (refer Attachment 5).
3.2
Catholic Community Services [Sydney] (CCS) – Toolkit development
CCS have developed a strong interest in developing means to address squalor and hoarding issues
consequently play a strong leadership role on the subject in NSW, and at times nationally.
In 2008, Catholic Healthcare Ltd received one-off funding from NSW DADHC to develop a project that would
provide assistance for people living in domestic squalor in a large region of Sydney (including Ashfield,
Botany Bay, Hornsby, Hunter’s Hill, Ku-ring-gai, Lane Cove, Leichhardt, Manly, Marrickville, Mosman, North
Sydney, Pittwater, Randwick, Ryde, Sydney, Warringah, Waverly, Willoughby, and Woollahra).
CCS acknowledge that hoarding or squalor situations contain highly complicated and often compounding
issues which need to be investigated to ensure a successful and sustainable intervention.
CCS developed a toolkit for both service providers and members of the community within the City of Sydney,
to respond to situations of squalor and hoarding, made possible by the City of Sydney's Community Services
Grants program. The Toolkit builds on the recommendations as set out in the 'Partnerships against
homelessness' Squalor Guidelines, providing:
•
•
•
•
definition and descriptions of the complexities involved (Getting Started)
an intervention flowchart (‘Pathway through the maze’, 2010)
resources and contact details for relevant local NSW organisations (Services and Resources), and
links to useful information pertinent to the geographic scope of service delivery.
CCS recommends that the Toolkit is read in its entirety before a course of action is determined. The
intervention flowchart is interactive making it necessary to complete all of the questions and carefully
consider the potential for the situation to be retrieved. Each question assists in guiding the user towards
suitable contact points and services for assistance in addressing issues.
The CCS material applies to the catchment area of the project (that is a large area of Sydney). Other
organisations could adapt the resource listing to their own geographic area and circumstances. The CCS
material is useful re squalor concepts and aspects of intervention, but stops short in terms of how to work
with a person beyond an industrial clean up, though other projects have addressed this (refer 3.3). The
material is designed to feedback to CCS.
commissioner of NSW; Office of Public Guardian; Clinical Policy and Practice, NSW Department of Health; Community Health Centre; Balmain Hospital; Social Worker & Clinical Nurse Consultant, SE Sydney Area
Health; Lawyer, NSW Guardianship Tribunal; Department of Ageing, Disability and Home Care; Anglican Retirement Villages).
151 Refer http://sydney.edu.au/medicine/people/academics/profiles/snowdon.php
152 McDermott S., Evaluation of the Severe Domestic Squalor Project: Evaluation Plan, SPRC Report 15/09, Social Policy Research Centre, University of New South Wales. August 2009. Refer
http://www.sprc.unsw.edu.au/media/File/Report15_09_Severe_Domestic_Squalor_EvalPlan.pdf
153 Refer: http://www.dadhc.nsw.gov.au/NR/rdonlyres/50B41AD4-57B5-4BF3-8989-FD5A528FADE6/3251/Squalor_Guidelines.pdf
154 Note: This guidance material was not intended to cover cases of self-neglect where squalor was not an issue, nor in cases of hoarding without squalor conditions.
Page 76 of 131
3.3
155
CCS Homeless and housing support services
and hoarding: Beyond the clean-up approach
- solution focused interventions for squalor
This project focuses on the issue of squalor rather than the impact, challenging the need to think differently
about community and social structures rather than the person. Potential aetiology could include health,
personality, functionality, life experiences and societal factors. The project addresses the complexity of
assessing severe squalor cases, highlighting irretrievability and sustainability as fundamental to assessment,
suggesting the development of solutions to:
Individual assessment: a balance between duty of care, societal values and personal choice; the person’s
156
daily decision making capacity; understanding the facts; the main choices; consequences and affect
The building: tenure; fire or safety or security risks; OHS; who assists with accommodation options if
needed
The environment: internal; external; access; intervention; pets; vehicles; legal /tribunal or council orders
The community: impacts; rights; expectations, fire or safety or health risks
Post intervention plans: client support, service provision and prevention.
The project emphasises shared solutions, responsibility, interventions and results between sectors.
157
3.4
National squalor conference, Pathway through the maze: 5 -6 November 2009 (Sydney)
158
CCS hosted the inaugural National squalor conference which aimed to raise the profile of severe domestic
squalor and aspects of hoarding, generate discussion and develop agreed priorities for future action.
159
Conference planning was guided by a Steering Committee, promoting the conference in Australia and New
Zealand, targeting:
•
•
•
community services, health, aged care, mental health
housing providers, clinicians, social work, animal welfare
emergency services, local, state and federal government, Academia , consumers and carers.
The conference program presented a rich tapestry of perspective and experience in relation to squalor and
160
aspects of hoarding from service providers and specialist around Australia. Over 400 delegates attended
from around Australia, New Zealand and Ireland (refer table 8).
Table 1: National Squalor Conference - Sydney 2009: Delegate geographic breakdown
NSW
VIC
SA
QLD
ACT
NT
Overseas
WA
TAS
69.2%
12.5%
6%
5.5%
4.5%
.8%
.8%
.5%
.2%
Keynote speakers included Professor John Snowdon, Psycho-geriatrician; Susan Graham, CCS Severe
Domestic Squalor Project; Assoc Professor Jill Gordon, University of Sydney; Dr Shannon McDermott,
Social Policy Research Centre UNSW and Father Bob Maguire (Victoria).
Follow up National workshop Sydney - March 2010
This workshop was attended by a representative group from the diverse sectors involved in responding to
squalor or hoarding in general; they discussed the following topics:
•
What is the role of a National Consortium? (that is, possible functions and how the consortium could
assist in progressing an improved response to this issue).
•
How could case or field workers be better supported?
•
How well do the sectors involved collaborate and coordinate our responses?
•
How do we encourage a greater understanding of squalor and hoarding issues?
155 Graham, S., Senior Project Coordinator, Solution Focused Interventions for Squalor and Hoarding (Catholic Community Services, Homeless and Housing Support Services) 2009.
156 “Capacity Toolkit” NSW Attorney General’s Dept 2008.
157 Lauder, et al, 2005
158 Refer http://www.nationalsqualorconference.com.au/index.php
159 Steering Committee made up of five representatives from Catholic Community Services, Dr Shannon McDermott, Social Policy Research Centre UNSW and Professor John Snowdon, Psycho-geriatrician.
160 Refer: http://www.nationalsqualorconference.com.au/presenters.php
Page 77 of 131
•
What do we need from the next National Conference (proposed 2011)?
161
Note: Another National Hoarding and Squalor conference is planned for 21 – 22 February 2012.
3.5
The ethics of intervention in squalor - The University of Sydney
Ethical dilemmas are often about impossible social tasks and in the case of squalor, there is the valid
proposition that living in squalor is undesirable for a range of reasons. However, there is the equally valid
proposition that humans should have the right of self determination and if they choose to live in squalor that
162
right should be respected. This is a particularly difficult pill to swallow for the helping professions.
While it may seem clear, especially in cases of danger that intervention is justified, it is equally clear that
resources can be wasted if the focus is on squalor, rather than the person living in squalor. Thus the result of
a well-intentioned cleanup can be a return to the same squalid conditions.
One thing that these ideas can do is to challenge and crystallise the questions:
•
Why are self neglect, environmental neglect and hoarding problems?
•
Who has the problem?
•
How do we evaluate risk?
•
What is our duty of care? Who shares in that duty?
•
How can we balance autonomy and beneficence?
•
How can we balance client’s rights and the rights of others?
It is important to recognise that in fields as complex as health and social care ethics inevitably involve
balancing competing principles and values. In the case of squalor we may never expect to feel wholly at ease
with decisions that need to be made, as here will always be room for regret, if only the regret that comes from
seeing an elderly person forced to relinquish their autonomy, no matter how necessary this may be for their
overall wellbeing.
Dilemmas may be irresoluble, but decisions are unavoidable. Working through the ethics of intervention may
assist to see a number of different sides of a problem.
3.6
Animal hoarding - Human or animal welfare? RSPCA NSW
163
RSPCA NSW experiences the following impacts as a result of responding to cases of animal hoarding:
• large amount of resources required (inspectors, animal ambulances, veterinary and shelter staff)
• enormous cost of veterinary care and ongoing treatment and care costs
• overcrowding in animal shelters and increased workload
• health concerns for the staff involved
• high ammonia levels – respiratory protection often needed
• injuries such as bites and scratches from animals who are frightened, aggressive or feral
• injuries from capturing animals in unsafe environments (for example, accumulated rubbish)
• resistance from owners - sometimes violence
• zoonotic diseases (for example, salmonellosis, giardia, ringworm, psittacosis, sarcoptic mange)
• emotional impact on staff and volunteers.
NSW RSPCA identifies the human welfare problem as well:
• Owners are usually living in the same conditions as the animals.
• Owners often have very strong bonds with their animals, even though they neglectful and cruel.
• Children or the elderly may also be living in the home.
• There may be drug and alcohol related problems.
RSPCA NSW suggests the animal welfare problem cannot be solved without assisting owners improve their
own welfare and that a collaborative approach between sectors is needed. Consistent with their goal of
preventing animal cruelty is continuation of program development and partnerships that have both an animal
and a human welfare focus. By supporting pet owners they support the welfare of their pets and assist with
reducing incidence of abuse and neglect.
161 Refer:http://hoardingsqualorconference.com.au/
162 Gordon, J., Finding a pathway through the ethical maze 2009. Centre for Values, Ethics and Law In Medicine, The University of Sydney. 2009.
163 Thorne, K; O’Shannessy, D; Animal Hoarding – Human or Animal Welfare. Pathways Through the Maze, National Squalor Conference, Sydney 2009.
Page 78 of 131
3.7
UnitingCare Ageing South Eastern Region NSW
UnitingCare Ageing South Eastern Region NSW have undertaken a project based on the DADHC Guidelines
(Partnership Against Homelessness 2007) to assist people living in severe domestic squalor. The project
called, Good living conditions, aimed to improve the living conditions of people living in severe domestic
squalor in the Illawarra Region (Wollongong, Shellharbour and Kiama).
In March 2009 an interagency working party was established with the purpose of:
• focusing on service co-ordination and cooperation to pool resources
• building on the existing evidence base, knowledge and expertise in the sector
• establishing an agreed local area interagency protocol
• including pathways for referral
• ensuring a consistent, sustainable and efficient service response.
Preliminary work indicated not many organisations were aware of the DADHC guidelines and of those that
were, only a small number were using the ECCS as recommended. Project progress:
•
•
•
•
•
•
•
•
The guidelines and the Northern Sydney Squalor Information Pack were distributed.
A squalor survey was completed and a list of useful resources developed.
A case study questionnaire was developed and mental health awareness training provided.
A list of referral sources and client support services, outside of the traditional approach was developed.
Service gaps and organisational limitations or eligibility were identified.
An agreed course of action was developed including guidelines and flowcharts.
A draft protocol was developed.
A squalor monitoring table was developed and distributed for data collection.
The protocol was finalised in October 2009 with the aim of taking it further to include engagement with and
endorsement of organisations. An educational DVD for community services staff is to be developed,
educational forums on squalor are planned and associated service support responses are to follow.
3.8
Public places - private issues: Helping rough sleepers in squalor: Mission Australia
164
People who are rough sleepers in squalor need to be understood in the following context:
•
•
•
•
rough sleeping (not every rough sleeper lives in squalor)
how do squalor and hoarding apply when sleeping rough
self-neglect when sleeping rough
squalor and hoarding in a refuge.
Principles need to be balanced between the right for people to be in public places and the right not be
harassed or moved on from public places unless there is a threat to security or personal safety or if people
are causing a breach of the peace.
Relationship with the person is the key, built on the following considerations:
• purpose of the intervention (that is, how to approach the person; build a relationship; health and safety
first, amenity is secondary; time to become familiar with rules).
• action is informed by the current situation (that is, respond flexibly – particularly regarding health status)
• regular, predictable visits (that is, plan visits and clean ups, for example every Friday morning)
• consistency in attitude, behaviour and rules (that is, go regularly with the same attitude and rules)
• set limits (that is,. have agreed standards - health, hygiene, size of hoard
• replace necessities (bedding, clothing) if removed for health or safety reasons
• short lead times for agreed clean ups - one week
• reward positive behaviour (for example, compliments, shopping, transport as appropriate)
• flexibility and persistence (that is, look for new solutions to entrenched problems)
• consent (that is, the rough sleeper needs to acknowledge the need for a reduction or clean up).
Ethical and legal questions need to be considered, for example the removal of objects and personal items
from a public place is theft. Partnerships with a range of sectors and services such as NGOs, cleaning;
lighting; fencing (City of Sydney), police, mental health, physical health, local (housed) residents. Refer
Attachment 3 for a sample of successful cases.
164 Fish, M., Byrne, D., Bosi, R., Homelessness Unit, City of Sydney and Outreach Team I-CHOSS, Mission Australia. Public places, private issues: Helping rough sleepers in squalor. City of Sydney. Homelessness
Unit, NSW. 2009.
Page 79 of 131
Attachment 1:
NSW PAH: Flowchart 1: For people living in squalor 165
165 Source: Partnership Against Homelessness- Guidelines for field staff to assist people living in severe domestic Squalor. August 2007
Page 80 of 131
Victorian Department of Health
Attachment 2: NSW PAH: Flowchart 2: Support for people who are unwilling to
accept assistance
Source: Partnership Against Homelessness- Guidelines for field staff to assist people living in severe domestic Squalor. August 2007
Page 81 of 131
Attachment 3:
Impact of squalor checklist
Extracted and adapted (January 2011) from NSW Partnership against homelessness. Guidelines for field
staff to assist people living in severe domestic squalor (August 2007)
Issue
Relevant Agency/Service
Excessive hoarding causing health and safety issues for
neighbours
DoH, local council
Complaints from adjoining neighbours regarding the mess, DoH, local council, some cleaning
invasion of space, excessive smells (from rubbish and/or services, local water authority
sewerage), fire hazards, or vermin infestation
Presence of dependent others, for example, children,
elderly relatives
DHS (Protective Services), DH,
ACAS, HACC services
Pets kept in poor health
RSPCA
Condition
Self-neglect with poor nutrition, dehydration, probable
untreated medical problems
Relevant Agency/Service
Medical, psychiatric services
Confusion, disorientation, memory impairment,
wandering and getting lost, delirium, acute psychiatric
symptoms such as hallucinations, threatening self-harm,
suicidal behaviours or symptoms suggestive of severe
depression
Medical, psychiatric services
Aggressive behaviour or threatened harm to others
Medical, psychiatric, drug and alcohol
services, police
Exposure to possible financial exploitation or abuse
Seniors Rights Victoria, Office of the
Public Advocate, ACAS, NGOs,
police
Threatened eviction and at risk of becoming homeless
Housing authority (DoH, landlord/real
estate agent), NGOs, local
government housing support service
Lives alone and/or unable to access help or supervision,
marked decline in activities of daily living and functional
status
Medical services, DHS, ACAS, local
HACC assessment, GP
Limited mobility and risk of falls, incontinence
Medical services, intake and referral
section of DHS, ACAS, Community
NGO’s
Utilities not present or not functioning, i.e. water, power,
sewerage, heating, telephone
Local council, local water authority,
NGOs, DoH, landlord/real estate
agent
Page 82 of 131
Attachment 4:
Occupational Health and Safety Checklist
Extract: NSW Partnership against homelessness. Guidelines for field staff to assist people living in severe
domestic squalor (August 2007)
• Is the structure of and fabric of the building safe and secure? Y/N
• Are the premises safe to enter (floorboards, ceilings)? Y/N
• Are the electricity, gas and water connected? Y/N
• Are there insulated or damaged power lines that could cause electric shock? Y/N
• Are there animals on the premises? Y/N
• Is there a fire hazard? Y/N
• Are protective clothing, gloves, safety helmet, mask, safety spectacles or goggles required? Y/N
• Is special equipment required? Y/N
• Is there a health risk? Y/N
• Are there weapons or explosive materials on the premises? Y/N
• Are there booby traps on private property? Y/N
• Are there slip hazards because of faeces? Y/N
• Are there fall hazards from climbing over barricades Y/N
• Will there be the likelihood or probability of physical attack from the occupant? Y/N
Note: It would be helpful if as many as possible of the above questions can be answered prior to the first
home visit, that is, at the point when referral is taken.
Page 83 of 131
Attachment 5:
Successful case studies – squalor
Some successful cases for people who are rough sleepers in squalor living in Sydney, New South Wales
A: Couple rough sleeping in squalor
Before
• Always an argument about reduction and cleansing
• Was more than 6 cubic metres included rotting food and clothing, foul stench
Intervention
(about 8 weeks (4-5 visits per week) from argument to cooperation)
• Agreed on permissible amount (2 cubic metres stacked neatly; in bags)
• Any health risk (rotting food, soiled clothing) or loose material removed. (no roof)
• Bedding to be rolled neatly and moved twice per week for cleaning
• They decide what is to go to bring it to allowable level, (empowers them).
After
• Now tidy, no foul odour (local community and police accept the standard of tidiness)
• Now ask for unscheduled reduction.
B: Self-neglect and squalor
Before
• Rotten mess; defecate in sleep area; fed rats and pigeons where he slept, foul stench
• Exceptionally poor personal hygiene (soiled clothing; bleeding skin infection, foul odour)
Intervention
(from foul mess to acceptable standards in 3 weeks, 4 visits per week)
• Reductions and cleansing decided by council and he was given choice on what bedding
to keep. Permitted two bags of clothing and he decided what to keep.
• Any household items removed (for example, VCR but no power)
• Health risk (dead animals; rotten food) must be removed
• Local residents gave food and he was asked to refuse what he couldn’t use that day.
After
• Now housed. Went to hospital (poor health) then housed.
• Not living in squalor. Excellent personal hygiene.
C: Pizza boxes
Before
• Collected food scraps; waste litter (pizza boxes; plastic bags; food wrapper)
• Poor toilet habits but toilet separated from sleeping area, very dirty bedding and clothing
Intervention
(from foul mess to acceptable standards in 1 week, 4 visits per week)
• Gave option for self management of squalor and he collected more
• So then agreed on limit (excepting health risk) and tidiness (for example, in bags)
• All material (other than agreed) was removed. Empowered and cooperative when given
choice of what to keep.
• Reductions twice weekly and each time it was a difficult negotiation
After
• Was keeping to agreed tidiness standards.
• Now left location after being assaulted.
D: Still friends after Guardianship
Before
(was evicted for extreme squalor ‘worst ever’ including collection of dead animals)
• Hoarding (indiscriminate collection but neat) on the street was about 8m3 (filled a truck)
• Hoarding on the street became a safe haven for vermin (including rats)
Intervention
(6 weeks from uncontrolled hoard to following limits [size & content])
• Extremely vulnerable woman over 60 year old; first priority to develop relationship
• After about 6 weeks agreed to reduction; minor conflict during weekly reductions to 3m3
• Rewards for cooperation: shopping and compliments. She chooses what’s kept in limit
Page 84 of 131
• Any health risk (dead animals, soiled clothing) immediately removed
• Agreed to Guardianship. (Will help support agencies manage collecting when housed)
After
• Now buries dead animals she finds rather than collects them
• Is managing the hoard size and vermin risk.
E: Self-neglect and squalor; eviction; getting back on track
Before
(Self-neglect and squalor led to eviction; then squalor on street)
• Regular admission to Accident & Emergency (A&E) Centres across Sydney; routinely
engaged when impatient then disengaged and returned to squalor
• Continual intoxication and extreme self-neglect and squalor; extremely vulnerable
Intervention
(8 weeks from self-neglect and squalor to sobriety)
• Establish single central support, I-CHOSS (used every A&E and still homeless)
• All connections across Sydney A&E Centres advised of plan to contact I-CHOSS.
• Assessed and new plan for housing created
After
• Sober for several months; Actively planning for housing
• Agreed to limits while in shelter.
NSW Contacts for working with rough sleepers and initiatives above:
Phone: (02) 92647219
Complex Needs Project Coordinator, Homelessness Unit, City of Sydney
Phone: (02) 92659472
Public Space Liaison Officer, Homelessness Unit, City of Sydney
Phone: (02) 83943900
Community Services Worker, Outreach Team I-CHOSS, Mission Australia
Page 85 of 131
Appendix 6:
Saving Inventory Tool
Revised (SI-R) (Modified Format) 166
For each question below, circle the number that corresponds most closely to your experience
DURING THE PAST WEEK.
0
None
1
2
3
4
5
1
A little
2
A moderate amount
3
Most/ Much
How much of the living area in your home is cluttered with possessions? (Consider
the amount of clutter in your kitchen, living room, dining room, hallways, bedrooms,
bathrooms, or other rooms).
How much control do you have over your urges to acquire possessions?
How much of your home does clutter prevent you from using?
How much control do you have over your urges to save possessions?
How much of your home is difficult to walk through because of clutter?
4
Almost All/ Complete
0
1
2
3
4
0
0
0
0
1
1
1
1
2
2
2
2
3
3
3
3
4
4
4
4
DURING THE PAST WEEK.
0
Not at all
6
7
8
9
10
11
1
Mild
2
Moderate
3
Considerable/ Severe
To what extent do you have difficulty throwing things away?
How distressing do you find the task of throwing things away?
To what extent do you have so many things that your room(s) are cluttered?
How distressed or uncomfortable would you feel if you could not acquire
something you wanted?
How much does clutter in your home interfere with your social, work or everyday
functioning? Think about things that you don’t do because of clutter.
How strong is your urge to buy or acquire free things?
4
Extreme
0
0
0
0
1
1
1
1
2
2
2
2
3
3
3
3
4
4
4
4
0
1
2
3
4
0
1
2
3
4
DURING THE PAST WEEK
0
Not at all
12
13
14
15
16
1
Mild
2
Moderate
3
Considerable/ Severe
To what extent does clutter in your home cause you distress?
How strong is your urge to save something you know you may never use?
How upset or distressed do you feel about your acquiring habits?
To what extent do you feel unable to control the clutter in your home?
To what extent has your saving or compulsive buying resulted in financial
difficulties for you?
4
Extreme
0
0
0
0
0
1
1
1
1
1
2
2
2
2
2
3
3
3
3
3
4
4
4
4
4
DURING THE PAST WEEK
0
Never
17
18
19
1
Rarely
2
Sometimes/Occasionally
3
Frequently/ Often
How often do you avoid trying to discard possessions because it is too stressful or
time consuming?
How often do you feel compelled to acquire something you see? For example,
when shopping or offered free things?
How often do you decide to keep things you do not need and have little space
4
Very Often
0
1
2
3
4
0
1
2
3
4
0
1
2
3
4
166 R.O. Frost et al. / Behaviour Research and Therapy 42 (2004) 1163–1182 1177. Refer International OCD Foundation http://www.ocfoundation.org/hoarding/tests.aspx
Page 86 of 131
20
21
22
23
for?
How frequently does clutter in your home prevent you from inviting people to visit?
How often do you actually buy (or acquire for free) things for which you have no
immediate use or need?
To what extent does the clutter in your home prevent you from using parts of your
home for their intended purpose? For example, cooking, using furniture, washing
dishes, cleaning, etc.
How often are you unable to discard a possession you would like to get rid of?
SI-R (Modified) Scoring Subscales:
1.
Clutter Subscale (9 Items):
Sum items: 1, 3, 5, 8, 10, 12, 15, 20, 22
2.
Difficulty Discarding/ Saving Subscale (7 items):
Sum items: 4 (reverse score), 6, 7, 13, 17, 19, 23
3.
Acquisition Subscale (7 items):
Sum items: 2 (reverse score), 9, 11, 14, 16, 18, 21
Total Score = sum of all items.
Interpretation of Scores
Means for Nonclinical samples:
Acquisition
Difficulty Discarding
Clutter
Total Score
Mean = 8.1; standard deviation = 4.1
Mean = 24; standard deviation = 12.0
Typical scores for people with hoarding problems:
Acquisition
Difficulty Discarding
Clutter
Total Score
Score greater than 13
Greater than 40
Page 87 of 131
0
0
1
1
2
2
3
3
4
4
0
1
2
3
4
0
1
2
3
4
Appendix 7:
Hoarding Rating Scale – Interview (HRS-1)167
Hoarding Rating Scale
Please use the following scale when answering items below:
0=
2=
4=
6=
8=
no problem
mild problem, occasionally (less than weekly) acquires items not needed, or acquires a few
unneeded items
moderate, regularly (once or twice weekly) acquires items not needed, or
acquires some unneeded items
severe, frequently (several times per week) acquires items not needed, or
acquires many unneeded items
extreme, very often (daily) acquires items not needed, or acquires large numbers of unneeded
items
1. Because of the clutter or number of possessions, how difficult is it for you to use the rooms
in your home?
0
Not at all
difficult
1
2
Mild
3
4
Moderate
5
6
Severe
7
8
Extremely
Difficult
2. To what extent do you have difficulty discarding (or recycling, selling, giving away) ordinary
things that other people would get rid of?
0
Not at all
difficult
1
2
Mild
3
4
Moderate
5
6
Severe
7
8
Extremely
Difficult
3. To what extent do you currently have a problem with collecting free things or buying more
things than you need or can use or can afford?
0
None
1
2
Mild
3
4
Moderate
5
6
Severe
7
8
Extreme
4. To what extent do you experience emotional distress because of clutter, difficulty discarding or problems
with buying or acquiring things?
0
None/ Not
at all
1
2
Mild
3
4
Moderate
5
6
Severe
7
8
Extreme
5. To what extent do you experience impairment in your life (daily routine, job / school, social
activities, family activities, financial difficulties) because of clutter, difficulty discarding, or
problems with buying or acquiring things?
0
None/ Not
at all
1
2
Mild
3
4
Moderate
5
6
Severe
7
8
Extreme
Interpretation of HRS Total Scores (Tolin et al., 2010)
Mean for Nonclinical samples: HRS Total = 3.34; standard deviation = 4.97.
Mean for people with hoarding problems: HRS Total = 24.22; standard deviation = 5.67.
Analysis of sensitivity and specificity suggest an HRS Total clinical cut off score of 14.
Criteria for Clinically Significant Hoarding: (Tolin et al., 2008)
A score of 4 or greater on questions 1 and 2, and a score of 4 or greater on either question 4 or question 5.
167
Tolin, D.F., Frost, R.O., Steketee, G., Gray, K.D., & Fitch, K.E. (2008). The economic and social burden of compulsive hoarding.
Psychiatry Research, 160, 200-211.
Page 88 of 131
Appendix 8:
A.
Hoarding Assessment Tool 168
Telephone Screening:
Date referral received: ______________
Worker receiving call: _________________ Department: _________________
Client name: ______________________________ Age: ________________________
Address: ___________________________________________________________________
Type of dwelling: _____________________________ Phone: _____________________
Referral Source (may be omitted to preserve confidentiality): _________________________
Phone: _ (_____)______-______
Household members: _________________________________________________________
Pets/animals? _________________ Own/Rent: ______________________
Family or other supports: (include names and phone numbers) ________________________
__________________________________________________________________________
Other Programs or private agencies involved: _____________________________________
__________________________________________________________________________
Physical or Mental Health Problems of client: _____________________________________
Are basic needs being met (that is, food/shelter)? __________________________________
Clients’ attitude towards hoarding _____________ Will client allow access:_____________
Description of Hoarding Problem: (presence of human or animal waste, rodents or insects, rotting
food, are utilities operational, are there problems with blocked exits, are there combustibles etc.)
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
Other Problems/ Needs: ______________________________________________________
Initial Hoarding Severity Rating: None ___ Mild ___ Moderate ___ Severe ___
Others to Involve in Initial Assessment:
_____________________________________________________________________________
_____________________________________________________________________________
*Modified after Arlington County, VA Hoarding Task Force’s Assessment Tool
168 Developed by Dr Randy Frost.
Page 89 of 131
Condition of the dwelling: (to be completed at the property)
B.
Date: ________________
Response Team Members and Phone numbers:
_____________________________________________________________
____________________________________________________________________
Please indicate whether the following appliances/utilities are in working order.
Yes
Stove/Oven
Kitchen sink
Washer/Dryer
Electricity
Furnace/Heat
1
1
1
1
1
No
Unknown
2
2
2
2
2
9
9
9
9
9
Yes
No
1
1
1
1
1
2
2
2
2
2
Fridge/Freezer
Bathroom sink
Toilet
Water heater
Shower/Tub
Unknown
9
9
9
9
9
Other:
Please indicate the extent of each of the following problematic living conditions.
Structural damage to house
Rotten food in house
Insect or rodent infestation in house
Large number of animals in house
Animal waste in house
Clutter outside of the house
Cleanliness of the house
Other (e.g. human faeces)
none
0
0
0
0
0
0
0
0
somewhat
1
1
1
1
1
1
1
1
severe
2
2
2
2
2
2
2
2
Comments
Please indicate the extent to which each of the following safety problems exist.
Does any part of the house pose a fire
hazard? (e.g. unsafe electrical cords,
flammable object next to heat sources
like furnace, radiator, stove)
How difficult would it be for emergency
personnel to move equipment through
the home?
Are the exits from the home blocked?
Are any of your stairwells unsafe?
Is there a danger of falling due to the
clutter?
Not at all
0
Somewhat
1
Very Much
2
0
1
2
0
0
0
1
1
1
2
2
2
Description
Please indicate the extent to which clutter interferes with the ability of the client to do
each of the following activities.
Activities of Daily Living
Prepare food (cut up food, cook it)
Use refrigerator
Use stove
Use kitchen sink
Eat at table
Move around inside the house
Exit home quickly
Use toilet (getting to the toilet)
Use bath/shower
Use bathroom sink
Answer door quickly
Sit in your sofas and chairs
Sleep in your bed
Clean the house
Do laundry
Find important things (e.g. bills)
Care for animals
N/A
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
Can
do
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
Can do with
difficulty
2
2
2
2
2
2
2
2
2
2
2
2
2
2
2
2
2
Unable to
do
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
Page 90 of 131
Comments
C.
Client Assessment: (to be completed during an interview with the client)
Mental Health Issues: for example, Dementia; see guidelines)
__________________________________
Frail/ elderly or disabled: _________________________________________________________
Family and other social supports: __________________________________________________
Financial status/ ability or willingness to pay for services: _______________________________
Hoarding Interview (questions to ask the client):
1. Because of the clutter or number of possessions, how difficult is it for you to use the rooms in your home?
Not at all difficult
Mildly
Moderately
Extremely Difficult
2. To what extent do you have difficulty discarding (or recycling, selling, giving away) ordinary things that other people
would get rid of?
No difficulty
Mildly
Moderately
Extremely Difficult
3. To what extent do you currently have a problem with collecting free things or buying more things than you need or
can use or can afford?
No problem
Mild problem
Moderate problem
Severe problem
4. To what extent do you experience emotional distress because of clutter, difficulty discarding or problems with buying
or acquiring things?
No distress
Mild distress
Moderate distress
Severe distress
5. To what extent does the clutter, problems discarding, or problems with buying or acquiring things impair or interfere
with your life (daily routine, job/school, social activities, family activities, financial difficulties)?
Not at all
D.
Mildly
Moderately
Severely
Mild
Moderate
Severe
Mild
Moderate
Fully aware & cooperative
Summary:
Level of risk: (Based on assessment of condition of the dwelling.)
None
Level of insight:
None
(Level of insight should be determined by comparing responses to the Hoarding Interview to the observed conditions
of the dwelling.)
Complicating factors: (for example, dementia, disabled)
_____________________________________________________________________________
E.
Recommendations:
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
Page 91 of 131
Appendix 9: Clutter Image Rating Scale (CIRS)169
Part 1 of 3
Appendix 9:
169 Frost et al., 2008
Page 92 of 131
Part 2 of 3
Page 93 of 131
Appendix 9:
Part 3 of 3
Page 94 of 131
Appendix 10: Squalor - to rate cleanliness of a person’s
accommodation
Environmental cleanliness and clutter scale**
Demographic details
170
MRN
(This sheet may be removed if it is desirable to de-identify
the client when communicating with other agencies)
NAME OF CLIENT
(ECCS)
SURNAME
OTHER NAMES
MALE
FEMALE
Date of birth and/or
approx age of client
Sex (please circle)
Marital Status
(please circle)
SINGLE
MARRIED/
DEFACTO
WIDOWED
DIVORCED
SEPARATED
NOT
SURE ?
Address
Does he/she live alone?
(please circle)
YES
NO
If not, who with?
Number and type
of pets
Home ownership
OWNER
TENANT-private
TENANT-DOH
OTHER- non-owner
(lodger)
Accommodation type
HOUSE
UNIT
BEDSIT
OTHER (specify)
LESS THAN
1 YEAR
1-3
YEARS
4-10
YEARS
OVER
10 YEARS
How long has he/she been
living like this? (please
circle)
Known medical illnesses
and/or disabilities
Mental disorders now or
in the past
170
Developed by G. Halliday and J. Snowdon (2006). This scale is based on the version devised by Snowdon (1986) which mostly
used items listed by Macmillan & Shaw (1966). Some descriptions used by Samios (1996) in her adaptation of the scale have been
included.
Page 95 of 131
PAGE 1 ( of 5 )
Raters should circle the box or number that best fits their observations in relation to the different items.
These descriptions are meant to be indicative but raters may decide between one category and another
based on aspects not mentioned in the boxes.
Name of Rater: …………………………………………………..
Rater’s phone no: …………………………..
A.
Date: .….…/……../………
ACCESSIBILITY (clutter):
0
1
2
EASY TO
ENTER and
move about
dwelling
SOMEWHAT
IMPAIRED access but
can get into all rooms
MODERATELY IMPAIRED
access. Difficult or impossible
to get into one or two rooms
or areas.
0-29%
30 to 59%
3
SEVERELY IMPAIRED access, e.g.
obstructed front door. Unable to reach most or
all areas in the dwelling.
60 to 89%
90 to 100%
of floor-space inaccessible for use or walking across
B.
C.
ACCUMULATION OF REFUSE or GARBAGE
In general, is there evidence of excessive accumulation of garbage or refuse e.g. food waste,
packaging, plastic wrapping, discarded containers (tins, bottles, cartons, bags) or other
unwanted material?
0
1
2
3
NONE
A LITTLE
Bins overflowing and/or
up to 10 emptied
containers scattered
around.
MODERATE
Garbage and refuse littered
throughout dwelling.
accumulated bags, boxes
and/or piles of garbage that
should have been disposed
of.
A LOT
Garbage and food waste piled kneehigh in kitchen and elsewhere. Clearly
no recent attempt to remove refuse and
garbage
ACCUMULATION OF ITEMS OF LITTLE OBVIOUS VALUE:
In general, is there evidence of accumulation of items that most people would consider are
useless or should be thrown away?
0
1
2
3
NONE
SOME ACCUMULATION
but collected items are
organised in some way
and do not much impede
movement or prevent
cleaning or access to
furniture and appliances.
MODERATE EXCESSIVE
ACCUMULATION
Items cover furniture in most
areas, and have
accumulated throughout the
dwelling so that it would be
very difficult to keep clean.
MARKEDLY EXCESSIVE
ACCUMULATION
Items piled at least waist-high in all or
most areas. Cleaning would be virtually
impossible: most furniture and
appliances are inaccessible.
Please indicate types of items that have been accumulated:
Newspapers, pamphlets, etc.
Electrical appliances
Clothing
Other items (what?.................................................)
Plastic bags full of items (If known, what items? ………….……….……….…..)
Page 96 of 131
D.
E.
CLEANLINESS of floors and carpets (excluding toilet and bathroom) :
0
1
2
Acceptably
clean in all
rooms.
MILDLY DIRTY
Floors and carpets look
as if not cleaned or
swept for days.
Scattered rubbish.
VERY DIRTY
Floors and carpets very dirty
and look as if not cleaned for
months.
G.
H.
I.
Excrement usually merits a 3 score.
Rate 1 if only one room or small
area affected.
CLEANLINESS of walls and visible furniture surfaces and window-sills :
0
1
2
3
Acceptably
clean in all
rooms.
F.
3
EXCEEDINGLY FILTHY
With rubbish or dirt throughout dwelling.
MILDLY DIRTY
Dusty or dirty surfaces.
Dirt comes off walls on
damp rag or finger.
VERY DIRTY
Grime or dirt on walls.
Cobwebs and other signs of
neglect. Greasy, messy, wet
and/or grubby furniture.
EXCEEDINGLY FILTHY
Walls, furniture, surfaces are so dirty
(e.g. with faeces or urine) that rater
wouldn’t want to touch them.
BATHROOM and TOILET :
0
1
2
3
Reasonably
clean
MILDLY DIRTY
Untidy, uncleaned, grubby
floor, basin, toilet, walls,
etc. Toilet may be
unflushed
MODERATELY DIRTY
Large areas of floor, basin,
shower/bath, are dirty, with
scattered rubbish, hair,
cigarette ends, etc. Faeces
and/or urine on outside of toilet
bowl
VERY DIRTY
Rubbish and/or excrement on floor
and in bath or shower and/or basin.
Uncleaned for months or years. Toilet
may be blocked and bowl full of
excreta.
KITCHEN and FOOD:
0
1
2
3
Clean
Hygienic
SOMEWHAT DIRTY
AND UNHYGIENIC
Cook-top, sink untidy and
surfaces dirty, maybe with
some spilt food. Refuse
mainly in garbage bin.
Food that could go off (for
example, meat, remains of
meal) left uncovered and
out of fridge.
Rate 1 If no food but fridge
dirty
MODERATELY DIRTY
AND UNHYGIENIC
Oven, sink, surfaces, floor are
dirty, with piles of unwashed
crockery and utensils etc. Bins
overflowing. Some rotten or
mouldy food. Fridge unclean.
VERY DIRTY
AND UNHYGIENIC
Sink, cook-top, insides of all
cupboards filthy. Large amount of
refuse and garbage over surfaces
and floor. Much of the food is putrid,
covered with mould and/or rotten,
and unsafe to eat.
Rate 3 if maggots seen.
ODOUR:
0
1
Nil /
pleasant
UNPLEASANT
for example, urine smell,
unaired.
2
MODERATELY
MALODOROUS.
Bad but rater can stay
in room.
3
UNBEARABLY MALODOROUS.
Rater has to leave room very soon
because of smell.
VERMIN (Please circle: rats, mice, cockroaches, flies, fleas, other):
0
1
2
None
A FEW
(e.g. cockroaches)
MODERATE.
Visible evidence of vermin
in moderate numbers e.g.
droppings and chewed
newspapers.
Page 97 of 131
3
INFESTATION.
Alive and/or dead in large numbers.
J.
SLEEPING AREA:
0
Reasonabl
y
clean &
tidy.
1
MILDLY UNCLEAN.
Untidy. Bed unmade.
Sheets unwashed for
weeks.
2
3
MODERATELY DIRTY.
Bed sheets unclean &
stained, for example, with
faeces or urine. Clothes
and/or rubbish over
surrounding floor areas.
VERY DIRTY.
Mattress or sleeping surface unclean or
damaged. Either no sheets or (if
present) extremely dirty bedding/linen.
Add up circled numbers to provide a TOTAL SCORE:
DO YOU THINK THIS
PERSON IS LIVING IN
SQUALOR?
(circle one)
NO
YES, mild
Not clutter
Clutter
Yes, mild
(lots),
+ clutter (lots)
not squalor
YES, moderate
Not clutter
YES, severe
Not clutter
Yes, moderate
+ clutter (lots)
Yes, severe
+ clutter (lots)
SUPPLEMENTARY QUESTIONS ( to add to description but not to score )
Comments or description to clarify / amplify / justify or expand upon above ratings:
PERSONAL CLEANLINESS
Describe the clothing worn by the occupant and their general appearance:
0
1
2
CLEAN AND NEAT.
Well cared for.
UNTIDY, CRUMPLED
One or two dirty marks and in need
of a wash
MODERATELY DIRTY
With unpleasant odour. stained
clothing.
3
VERY DIRTY
Stained, torn clothes,
malodorous.
Is there running water in the dwelling ?
YES or NO ?
Is electricity connected and working?
YES or NO ?
Can the dwelling be locked up and made secure?
YES or NO ?
Page 98 of 131
MAINTENANCE, UPKEEP, STRUCTURE
This rates the state of repair and upkeep by owner/landlord. If the accommodation was
cleaned up as much as possible, to what extent would the dwelling require painting,
refurbishment, structural repairs, etc before it would be reasonably habitable?
0
NONE
1
2
A LITTLE
Minor repairs & some painting.
A FAIR AMOUNT
Some structural repairs plus
painting.
3
LOTS
Major structural repairs
required, and then
painting.
TO WHAT EXTENT DO THE LIVING CONDITIONS MAKE THE DWELLING UNSAFE OR
UNHEALTHY FOR VISITORS OR OCCUPANT(S)?
0
NOT AT ALL
1
2
POSSIBLE RISK
of injury e.g. by falling
CONSIDERABLE RISK
of fire, injury or health problem
Page 99 of 131
3
VERY UNSAFE
The dwelling is so
cluttered and unhealthy
that people should not
enter it, (except if
specialists with
appropriate clothing and
equipment) and/or there
is a high fire-risk.
Appendix 11:
Living Conditions Rating Scale
Living conditions rating scale (LCRS)171
The aim of this rating scale enables Governments and community organisations to gauge the nature
and urgency of the issue.
It promotes better planning and intervention strategies especially when seeking the support and assistance
of other agencies or family members.
The scale has 13 domains, totalling 39 - each scoring 0 to 3.
1 = acceptability
2 = moderate
3 = extensive
____________________________________________________________________________________
Information for Scoring:
Interior of house
Scale
Accessibility
Odour
Score according to ability to access for example, 3 for completely unable to enter due to
holes in floor/belongings piled up.
Score 3 only if it is physically impossible to stay in the residence.
Lighting
To score 3, no lighting/natural lighting that is, very dark and unable to see without torch.
Floor/carpet
Score 3 if unable to see the majority of carpet due to covering of newspapers etc.
Walls
To score 3, the majority of the wall is covered with filth etc.
Furniture
To score 3, there is only a mattress and no other furniture.
Kitchen
To score 3, there must be no evidence of organisation, cleaning or rubbish removal over a
long period of time; or no kitchen.
To score 3, there must be only minimal food/ poorly stored food.
Food
Disposal of excreta
To score 3, there must be a blocked or not functioning sewerage system; or no bathroom;
and/or no toilet.
To score 3, human or large pet excreta (exclude occasional cockroach dropping).
Hoarding
To score 3, there must be a massive number of items stored in the home.
Clutter
To score 3, there must be more clutter than accessible routes through the home.
Vermin
To score 3, vermin must be visible on inspection.
Bathroom/toilet
Living Conditions Rating Scale
Organisation of Person who completed rating scale: ………………………………………
Age of Client: ………… Sex of Client: …………… Post Code……........
Dwelling [circle those appropriate]:
single/ shared/ unit/ house/ group home/ rented/ privately owned/other………………………
Age of Dwelling: ………………………….
Interior of house
Accessibility
Odour
Tick / comment
•
•
•
•
•
•
•
•
within acceptable standards
some difficulty entering the house or rooms
moderately difficult to enter the house or rooms
rooms or house inaccessible or impossible to enter
safely
slight unpleasant smell
moderate unpleasant smell
unable to spend any length of time in house due to
the smell
171 Adapted from published criteria: Macmillan D,Sahw P. Senile breakdown in standards of personal and environmental cleanliness. BMJ 1966:I:1032-37. Clark AN,Maniker GD, Gray I. Diogenes syndrome: a
Page 100 of 131
Lighting
Floor/carpet
•
•
•
•
•
•
•
•
Walls
•
•
•
Furniture
•
•
•
•
Kitchen
•
•
•
•
•
Food
•
•
•
•
Bathroom/ toilet
Disposal of excreta
(include pet excreta)
Hoarding
Clutter
(include clothing)
Vermin
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
poor lighting
most lights not working
no lighting available
some rubbish, food stains, filth covering floor
moderate amount of rubbish, food stains, filth
covering floor
thick covering of newspaper, cardboard, discarded
packaging and stains on floor covering
some filth, nicotine stains and grime covering some
walls
moderate filth, nicotine stains and grime covering
most walls
all walls covered with filth, nicotine stains and grime
acceptable amount of furniture (bed, table, chairs,
white goods)
short of some necessary items (that is, no couch or
bed)
missing essential items (for example, no fridge or
stove but has a bed)
no essential furniture (that is, mattress only)
some unwashed crockery and benches left for a
couple of days
most crockery unwashed and benches unwiped for
some time
full of unwashed crockery, mouldy scraps evident,
benches not wiped for months or more
acceptable amount of storage space and healthy
variety of food
some storage problem (that is, food not in
cupboards)
reasonable variety of food
balanced diet only on pay days and /or shopping left
in bags on the floor
little food in the house egg staple diet of tea, bread,
biscuits, cakes and tinned food and/or inappropriate
storage of food (that is,. frozen food not in freezer)
workable sewerage system
blocked or non-workable sewerage system
no excreta noted throughout the house
excreta noted in the house i.e. on floor or walls
some collection of singular items i.e. cartons, bottles,
newspapers
moderate collection of singular items
mass collection of singular items
some cluttering of living space
moderate amount of clutter starting to affect living
space
bags and boxes markedly reduce living space
some evidence of vermin present
moderate amount of evidence of vermin present
rats/cockroaches are evident most of the time
Please note that this is a guide only, if a person you are assessing does not rate highly on this
scale; it does not mean that they should not be referred to relevant services for assistance.
Source: Adapted from published criteria: Macmillan D,Sahw P. Senile breakdown in standards of personal and environmental cleanliness. BMJ 1966:I:1032-37. Clark AN,Maniker GD, Gray I. Diogenes syndrome: a
Page 101 of 131
Appendix 12:
Victorian local service response
The following examples of practical service response are loosely defined by program type, but more so by
informal local networks, made up of a broad range of service providers and program types that respond to
cases of hoarding and/or squalor. These samples are by no means exclusive.
1.
Housing – Support for High Risk Tenancy (SfHRT)
1.1 North and West Region Hoarding Working Group
This working group is run in conjunction with Aged Care, North and West Region with representation from
Department of Human Services: SfHRT, Complex Clients; Disability; Department of Health: Aged Care,
Mental Health; Aborigines Advancement League; Wintringham; Moonee Valley Council, Aged and Disability
Services; North East Housing Service Melbourne Clinic; HomeGround SHASP and Outreach; Salvation
Army, Aged Care; Merri Community Health Services, PHaMs; Geriatrician, Western Health; ACAS; HACC;
RDNS.
The group focuses on localised responses to public housing tenants experiencing hoarding as well as
information sharing and collaboration across program areas, such as deciding on some key best practice
principles for working with the hoarding client group:
•
•
•
•
•
•
•
harm minimisation, utilising existing frameworks
strong data collection to build an evidence based framework
grass roots/practical responses
multi disciplinary approach
capacity to access formal secondary consults - including complex case discussion, group de-briefing
and clinical supervision
flexible, holistic and long term worker involvement
specialised therapy and links to mental health supports.
In January 2010, a draft Information pack (including two flowcharts) was produced to support a regional
response to clients with compulsive hoarding behaviour and in October 2011 an education forum was
organised (refer Attachment 1). This working group discussed the benefit of developing a resource guide
and is considering the usefulness of a state wide website.
1.2 Loddon Mallee Region Hoarding Working Group
In 2009, Loddon Mallee Housing Group (LMHG) Community Connections Program, initiated a focus on
hoarding after acknowledging increasing demand and lack of alternative resources or case management
response. In January 2010, a multi disciplinary working group was developed within LMHG which later
expanded to include service providers external to LMHG (which commenced trading as Haven in 2011).
This working group meets bi-monthly. Member organisations include Haven, DHS SfHRT, Advocacy and
Rights Centre, Bendigo Health - Case Management Services/HART/ACAS; Villa Maria; La Trobe
University, RSPCA; Police, CFA, DHS OoH; Community Housing Ltd, Community Equity Housing, St Lukes
Mental Health, Council HACC, DH – Aged Care.
The purpose of the working group has been to assist in identifying and supporting individuals in the Loddon
Mallee Region who are experiencing difficulties due to their hoarding and/or squalor behaviour by aiming to:
•
•
•
create a best practice framework for local agencies
develop and review an information pack
provide the community with education formally and informally.
La Trobe University, Bendigo is running a research project called ‘Living beyond the Pale: Understanding
compulsive hoarding and domestic squalor, and associated environmental health concerns’. A full report on
the preliminary study ‘Scoping Hoarding in Central Victoria’, will be publically available in the near future.
Haven has received strong organisational support from upper level management, including their Board.
Haven are recognised as an authority on hoarding and squalor in the state and by the Department of Health
regional office, however the agency is not funded to provide this service and due to increasing demand
needs to prioritise clients. Haven is providing data to the Department of Health regional office to evidence
their hoarding/squalor work.
Page 102 of 131
1.3
Barwon South West
City of Greater Geelong (CoGG): Cross Divisional Hoarding Project (CDHP)
The CoGG developed the CDHP in response to hoarding being identified as an emerging community health
and safety issue. In 2011 the CDHP won the joint MFB/CFA Fire Services Award which recognises Aged
and Disability providers who have improved fire safety for their clients, workers or in their local community.
The CDHP project considers all aspects of hoarding and seeks to support the community through the
provision of supportive services, networking within Council and with agencies external to Council using
education and awareness raising strategies.
The process within this framework has resulted in a number of outcomes such as:
•
CoGG ran a community Hoarding Forum (April 2011), to provide an opportunity to hear from experts in
the field (Dr. Mogan, Professor Michael Kyrios, MFB, CFA, Dr Sook Meng Lee), to raise awareness of
hoarding issues and to broaden the membership and scope of the existing Council Hoarding Taskforce
which aimed to develop strategies, positive processes and procedures in response to hoarding.
Organisations were invited to become active members.
•
The Geelong Hoarding Network was developed aiming to: maximise opportunities, share information,
develop activities that are innovative and strategic, identify gaps, take up funding opportunities and
share resources from agencies to develop and deliver initiatives to fill those gaps.
The Geelong Hoarding Network is open to all community, housing, health care services, education and
Local and State Government departments that have hoarding as a component of their work, or have
incidences of people experiencing hoarding when they otherwise would not have this on their agenda.
•
Membership of the Hoarding Network is made up of Bethany Community Support; CFA; City of Greater
Geelong; Borough of Queenscliffe, Barwon Health; GP Association, Geelong; The Salvation Army
Kardinia Network; St Laurence; Victoria Police; DHS - Office of Housing, Wintringham, SalvoConnect
and Southern Cross Care).
The network meets monthly and is coordinated by the CoGG and chaired by a CoGG local Councillor. The
Councillor is also a member of the CDHP. The CDHP aims to continue to develop and deliver key health
and safety outcomes.
CoGG motion to MAV State Council
The CoGG submitted a motion for consideration by the MAV State Council on 28 October 2011 asking:
‘That the MAV investigate the extent and impact of hoarding across Victorian Local Governments with a
view to developing a collaborative framework to address this burgeoning issue.”
1.4
Eastern Metropolitan Region (EMR)
The DHS EMR combined the regional functions of the Multiple and Complex Needs Initiative (MACNI); the
At Risk Tenancies Initiative (ARTI) and the High and Complex Needs programs (HACN programs) within
Housing, Primary and Complex Care, calling it the DHS EMR Complex Care Program (EMR CCP) which
includes:
•
•
•
regional coordination and consultation
access to HACN programs
complex care regional panel (including access to MACNI central programs).
Support models that enhance case and service coordination and provide opportunities for secondary
consultation and systems review have been shown to improve outcomes. People in this target group often
require multiple and coordinated service responses or specialised responses that exceed the capacity of
core services.
The EMR CCP offers regional coordination and consultation to any people with high and/or complex needs
who are over 16, are struggling to obtain supports because they fall through service gaps, present
significant safety risks and/or are exhausting the existing provider’s ability to provide support. The EMR
CCP receives calls from the public, private providers/practitioners and funded programs seeking advice and
consultation.
Page 103 of 131
The main role of the program is to pull together a multi sector response (practical and clinical), maintain a
Coordination role, as well as carry a small case load. The EMR CCP establishes and reviews care plans,
separate to a response to an urgent situation.
In the above context the EMR CCP responds to cases of hoarding and/squalor, coordinating appropriate
regional program involvement, depending on what is required on a case by case basis. Working in multi
disciplinary teams is the most effective model to respond to people with hoarding behaviour and/or living in
squalor conditions.
EMR CCP connects with the area mental health team for clinical services, other programs like Salvation
Army Eastcare, non-government psychiatric disability rehabilitation and support services (PDRS) and a
range of local council services. Some agencies will do clean ups, it depends on the level of outreach
support, capacity to respond and OHS concern.
The Personal Helpers and Mentors program (Cwlth) is particularly responsive due to unrestricted
timeframes and clients do not need a diagnosis to receive support. The Community Connections program
also plays an important role in relation to hoarding response.
DH Mental Health fund Eastern Access Community Health (EACH) to cover the outer east of EMR, MIND
(mental health) to cover the Central East and JobCo for the Boroondara area. Community Health programs
are not generally accessed as their services are predominately centre based with minimal outreach. This
client group are less likely to attend a centre for assistance.
There is goodwill to move forward. Clinical expertise is growing with mental health (PDRS) and private
practitioner Dr Mogan, providing support and education.
DHS EMR is looking at some time in the future, to develop a broader regional focus for this program, with a
reference group. There is capacity to expand this regional model with heightened resources and capacity.
1.5
Southern Metropolitan Region
In 2011, a training session on hoarding was provided by SfHRT for OoH and SfHRT staff, a one day
session by a private consultant as well as by Dr Mogan. DHS Housing is hoping to run another training
session in 2012 for the same group, but expand to include staff from homelessness agencies.
The DHS Housing program also attends the SMR Hoarding Special Interest Group (refer point 7).
1.6
Gippsland
As in other regions, the profile of hoarding and squalor is increasing. Gippsland responds on a 'case by
case' basis. There has been development (particularly in housing), with education of staff, referral
processes to supports, procedures to capture more information and to help provide a more detailed profile
of hoarders within the region.
Hoarding is an issue that SfHRT has highlighted and an area where service gaps exist, there is no 'one fix
for all approach' - rather the opposite. Due to the complex nature of hoarding behaviour, response requires
a collaborative approach of services and supports.
There are opportunities available to identify issues for action/ service gaps such as hoarding: develop
regional responses within the SfHRT position, seek support from OoH and the newly developed DHS Client Outcome Teams, of which SfHRT is part of. In addition the One DHS model will provide the
mechanism for SfHRT to further develop and promote collaborative approaches to respond more effectively
to complex clients.
2.
Salvation Army, EastCare: Living Well Program
The HACC Living Well Program (formed 2009) is an amalgamation of the HACC Home Care program and
HACC Outreach Worker (HOW) pilot project (2005), working closely with the Community Connections
brokerage program funded by the Victorian DH, Aged Care.
The aim of the HOW pilot project was to work with clients with complex needs to improve their daily living
skills and address the OHS issues enabling them to access mainstream HACC services and continue to
live independently in the community. Funding for this pilot project was allocated to Salvation Army EastCare
as they had existing programs (The Community Connections Program and Home Care position), that would
provide peer support for the HOW position.
Page 104 of 131
Following an evaluation of the HOW pilot (January 2007) the project was recurrently funded and
amalgamated with the Home Care position as both programs were similar, forming the Living Well Program
enabling region-wide coverage.
Current status
The Living Well program works with HACC eligible clients with complex care needs whose environment,
living circumstance and/or behaviours create a barrier to the provision of mainstream HACC services.
A focus of the program is hoarding due to the high prevalence of complex care referrals from regional
HACC and other program providers, who cite occupational health and safety restrictions/risks in working in
the homes of people with hoarding behaviours. EMR HACC providers also indicated their funding
limitations due to the type and length of intervention required regarding hoarding cases.
The Living Well service provides generally 3 – 5 hours of contact per client once a week; a focus on
getting to know the clients very well, placing a strong emphasis on positive reinforcement for changes to the
property, as well as general well-being.
172
Motivators for change are encouraged; linking the person into the community as well as paying attention to
their immediate space, using rubbish skips if needed. It is difficult to define a “typical” hoarder due to the
wide range of underlying motivations and co-morbid issues associated with these behaviours.
The Living Well program works closely with SfHRT, mental health, HACC and generalist case management
services as well as with Dr Chris Mogan, to ensure practice is grounded in a research and evidence base.
173
Table 1: EastCare Living Well Program referral characteristics 2007-2009
2007- 09
82 cases
12.5%
21.3%
15%
12.5%
Referral characteristics
Spread evenly across the Eastern Metropolitan
region (more in the Outer East)
- 2% had indigenous status
- majority born in Australia
31-40 years old
41-50 years old
51-55 years old
61-70 years old
- 66% females
- 34% males
Majority of referrals came via community based
services and ACAS
at the time of referral, other health issues
- 26% was common
- 9% diagnosed with definite mental health issues.
The Living Well program has a long waiting list. The DH EMR office have commenced planning for an
evaluation of the Living Well program.
3.
Salvation Army (SA) CACPS – Western region
The SA Community Aged Care program provides CACPs in the north western metropolitan region.
Approximately 30 per cent of their clients have issues with hoarding and excessive clutter and a much
smaller amount of clients have issues with squalor.
Clients are prioritised from social and financially disadvantaged backgrounds with limited familial or
community connections, with histories of homelessness residing in public housing, boarding/rooming
houses, supported residential services, caravan parks or in their own homes - which may be in varying
degrees of disrepair.
The SA CACP client’s are aged with varying degrees of alcohol use/abuse, mental health, dementia,
challenging behaviours, intellectual disability, acquired brain injury, gross self-neglect and usually poor
insight into their living conditions. The SA has found that hoarding/squalor is chronic and progressive
requiring intensive case management; it doesn’t discriminate and can affect anyone, presenting an
increased risk to elderly clients.
The SA CACP program view hoarding and sometimes squalor as a learned behaviour initially, used by the
client as a way of coping and managing certain stressors (e.g. anxiety, loss, grief) in their daily lives. Over
time this behaviour grows in frequency and scale to a point where it is destructive and far less helpful to the
172 Extract Office of Housing North and Western Hoarding Local area service provider support network. Minutes 29 September 2010.
173 Stylli Tom, Manager Community Connections and AOD Programs, Adult Programs, The Salvation Army. Eastcare. Feb.2010
Page 105 of 131
client’s health and welfare. People affected by hoarding seem to have poor insight, they change when they
are ready to and progressing to that point service wise requires time and intensive engagement.
Sometimes external forces rather than a client’s choice seem to trigger the need to change.
SA CACP provide long-term support to older people with hoarding behaviour within program guidelines,
valuing the relationship, being patient, supportive, helpful and empathic - encouraging clients to make
choices for themselves exercising their preferred levels of dignity of risk.
4.
Inner South Community Health
DVD production
A DVD called Working with People with Hoarding Behaviours was produced in 2010 as a learning resource
containing practical strategies designed to assist HACC staff to work in the area of Hoarding.
The project was an initiative of Southern Metropolitan Region (SMR) HACC Training (Vision Australia)
and SMR HACC Training Advisory Committee in partnership with the Inner South Community Health
Service. The SMR HACC Training Program receives funding from the Victorian and Australian
Governments through the Victorian HACC program.
The DVD explores hoarding with a range of experts and care providers who have worked with people who
hoard. Some people with hoarding behaviours also share their personal insights. Education material was
also provided as part of the package made up of discussion and reflection questions and resources.
Hoarding support group - Dr Chris Mogan currently runs a hoarding support group at Inner South
Community Health. Planning for 2012 is currently underway.
5.
Wintringham
Wintringham provide a broad range of affordable housing and support services to frail, elderly homeless
men and women in Melbourne. Their Community Housing and Support Team (Northern/City) utilise a mix of
their CACP, EACH, ACHA and HSAP services to respond to cases of hoarding and/or squalor. They learn
as they go with regard to what works and what doesn’t, suggesting success is very much dependant on
localised relationships and having regular contact with a consistent and limited group of workers.
Supporting case managers is a challenge as hoarding behaviours can be such a difficult issue to work with.
Wintringham utilise Dr Chris Mogan as a secondary consult, but suggest that the counselling model is only
suited to a certain type of client. They also appreciate working with MFB when appropriate.
Wintringham emphasise their intervention is limited to older aged clients, but are eager to continue raising
awareness and working collaboratively, to share their experience and expertise with other sectors such as
community mental health and APAT. Wintringham hope that hoarding will be included in DSM 5 as it could
assist referral pathways and treatment options.
Wintringham value capacity building opportunities such as networking, building referral links and expanding
case management knowledge, in this context they organised a North and West Metropolitan Region forum
(September 2011) with the support of other service providers, to raise awareness and work towards
improved outcomes for people with hoarding behaviours and living with environmental neglect (refer
Attachment 1: North and West Region Hoarding Forum Flyer).
Hoarding data snapshot - 1 January, 2011
Wintringham collected data from their residential aged care, community aged care and housing services in
their Northern/City division. The snapshot data was counted and provided by Managers and Case
174
Managers in those funded services,
providing an example of the number of hoarding related cases an
aged care organisation such as Wintringham, is supporting in residential care facilities and supported
community housing properties.
174 Provided by Kate Rice, Manager, Wintringham Community Housing and Support programs, Northern Metro and Melbourne city.
Page 106 of 131
Table 2: Wintringham hoarding data snapshot 1 January 2011
Total number of
residents at time of
count
Compulsive
Hoarding
Behaviours
Squalor/
Environmental
Neglect Behaviours
Clutter
Issues
10
1
Residential Care Facilities
220
17
33
2
Wintringham Housing Properties
200
6
3
6
3
Community Care (including CACPS,
EACH. EACH D)
23
28
22
6.
Western Health: Western Aged Care Assessment Service (WACAS)
175
Hoarding associated with Squalor – a working model for field staff.
Clients with hoarding behaviours and/or who live in squalor are increasingly referred to WACAS with
varying types of response depending on the individual assessors’ experience and knowledge of the
condition.
The WACAS model is based on a combination of available evidence, experience and resources reflecting
agreement at a local level between a range of organisations. WACAS has established working relationships
with The St Vincent de Paul Society and the Salvation Army CACPs, a private cleaning service, RDNS, Lort
Smith Hospital, RSPCA, MFB and VCAT when required.
WACAS draws upon its multidisciplinary team to assess hoarding clients. When cognitive, physical or
psychiatric illness is present the person is referred for appropriate treatment. WACAS coordinates the
intervention after obtaining consent. Pre-intervention planning is necessarily detailed with frontline staff
briefed prior to the intervention. Available response time is often limited due to competing pressures.
WACAS obtains funding for initial de-cluttering from The St Vincent de Paul Society. The client is
subsequently referred to the Salvation Army CACP for case management, ongoing monitoring and
maintenance of the client's health care needs and domestic environment. The success of this model is
dependant on client consent and where the client is deemed safe to remain at home with increased
community supports. The long-term feasibility of such partnerships is uncertain.
WACAS advocates and lead with regard to supporting clients with hoarding behaviours in the community,
by supporting their own staff and providing education opportunities such as forums (e.g. video-conferencing
to country Victoria), to better understand and manage clients with hoarding behaviour.
7.
Caulfield Aged Persons Mental Health
The Caulfield Mobile Aged Psychiatry Service (MAPS) is seen as pro-active in responding to hoarding
cases. They have worked with the MFB on hoarding since before 2008 and have been instrumental in
developing the DVD Working with People with Hoarding Behaviours 2010, with Inner South Community
Health Service and Vision Australia.
SMR Hoarding Special Interest Group
The SMR Hoarding Special Interest Group commenced as a collaboration between Caulfield Aged
Psychiatry Service and Bayside CACP program, both of whom had an interest in hoarding, and noticed that
other services were struggling with the same issue, so a group was formed to pull together ideas about
what approaches services were taking, what resources they had and to identify gaps.
The group meets bi monthly and is open to anyone with an interest in hoarding - currently service providers
from the Cities of Port Phillip, Stonnington, Glen Eira, Kingston, Bayside and Greater Dandenong attend.
The meetings provide education, the development of a services data bank sensitive to issues related to
hoarding (e.g. cleaning, rubbish removalists and gardener's), opportunity to share ideas and interventions
strategies around difficult engagement, accommodation (rental or MOH), age, capacity and legal issues.
At times there is perceived pressure from other providers to ‘fix’ the problem. Trying to balance different
and at time competing interests can be very difficult. Service response varies as there are no clear
175 Dr Sook Meng Lee (Geriatrician) Western Health Service
Page 107 of 131
guidelines indicating who takes overall responsibility. This fragmentation is reflected in the experiences of
people who have a hoarding issue and often why they are reluctant to seek assistance.
Caulfield MAPS response model
176
The Service Director of Caulfield MAPS sees assessment of patients with hoarding issues as part of core
business for AMHSs, based on a premise that everybody who hoards or lives in squalor more than likely
has impairment, even though the literature suggests that up to 50 per cent have no psychiatric diagnosis.
Dr Macfarlane suggests this is because a ‘standard’ psychiatric assessment (undertaken by a CAT team or
generic AMHS clinician) is geared towards detecting dementia (MMSE) depression, schizophrenia and
bipolar disorder. CAT teams often lack knowledge of frontal lobe assessments that might otherwise allow
detection. He suggests adapting appropriate hoarding and squalor assessment tools, based on those
already available would he useful as well as considering guidance for AMHSs on the assessment of
hoarding/squalor as a mental health condition and on frontal lobe functions.
All this assumes that the team agrees to assess a person in the first place. Often intake criteria for
assessment emphasise risk to self or others (usually narrowly defined as risk of self-harm, suicide, or
physical threat by violence to others), in the presence of psychiatric symptoms. Hoarding/squalor, perhaps
by virtue of non-inclusion in DSM, are not seen by CAT teams as symptoms.
The Caulfield Aged Psychiatry Service triage worker alerts the Service Director to any hoarding/squalor
referrals with a view to him assessing them as he knows what to look for, has a research interest and
ensures the outpatient team is supported in the best way possible.
The Service Director sees people with hoarding behaviours at the Caulfield campus if they can arrange
their own transport, he also makes home visits which are often far more instructive and useful but impact
more on limited time. After an assessment, diagnostic and management advice is provided to the referrer
and/or any identified GP, with the patient's consent.
8. St Vincent’s Health Melbourne (SVHM): Treatment Response and Assessment
for Aged Care (TRAAC)
The Hospital Admission Risk Program (HARP) aims to reduce the avoidable use of hospitals through
interventions provided in the community, focusing on people with chronic and complex health care needs
and those who are frequent presenters to the public hospital system.
Multiple SVHM programs are managed under HARP including the Assessment Liaison and Early Referral
Team (ALERT), The Cottage and Treatment Response and Assessment for Aged Care (TRAAC). Each
program has formal partnerships with community agencies including Local government, Community Health
and RDNS. Cases involving hoarding and squalor present a considerable challenge to SVMH HARP
clinicians who attempt to support safe discharges from and prevent future readmission to hospital.
People who experience compulsive hoarding and/or squalor can be difficult to manage when they present
within the hospital system as the condition is often undetected, the presenting condition may be typical of
an ageing person such as a fall or complications re medication mismanagement. People who hoard have
difficulty with organisation and are unable to follow medical regimes, however most of the time their general
practitioners are unaware they have a hoarding condition.
The HARP program responds to referrals from the community or a recent presentation to the hospital only
to discover at a home based assessment, that the symptoms are the direct result of hoarding behaviors.
The SVHM TRAAC team have staff based with Local Government services (SVHM catchment Darebin,
Moreland, Yarra and Boroondara), usually co-located with HACC/other aged care services. This alignment
places TRAAC staff in a uniquely flexible position to co-ordinate an appropriate service response involving
contributions from a number of services in local government as well as health services such as
geriatricians, Aged Psychiatric Assessment Team (APAT), Cognitive, Dementia and Memory Service
(CDAMS).
176 Steve Macfarlane, Clinical Director and Associate Professor of Aged Psychiatry, Caulfield Aged Psychiatry Service, Caulfield Hospital, Victorian Department of Health.
Page 108 of 131
TRAAC suggested hoarding behaviours eventually catch up with people, they can no longer hide or cover
their behaviours or symptoms, the effort becomes too onerous in addition to other health conditions (e.g.
heart, diabetes, falls), thus the unplanned admission to hospital. TRAAC indicated the hoarding condition is
well developed by this stage and even more challenging to address and difficult to engage the person.
TRAAC has brokerage which is used flexibly and broadly for example, purchasing respite in residential age
care facilities whilst the person’s home is cleaned up to some extent, prior to them returning, or respite time
in SVHM The Cottage (6 beds), usually provides strengthening time (pre/post hospital care) for homeless
people. TRAAC also links with St Vincent’s at Home.
Planned research study
TRAAC plan to undertake a research study that will explore the problem of hoarding and squalor amongst
HARP clients who present to the program through various entry points including Emergency Department,
ACAS, RDNS and St Vincent's at Home, ALERT, The Cottage and Local Government. Comparative data
will be gathered to identify current responses to hoarding and/or squalor amongst the various HARP
programs including barriers to service delivery and service coordination.
TRAAC have never documented their response to hoarding and squalor nor have they collected any data,
seeing fewer than 10 cases per year varying greatly in complexity and severity.
The research intention is to develop a multi-disciplinary, service coordination HARP approach to respond to
people who are neglecting their home environment to the extent that it creates a health risk and
confounding hospital discharge planning. With community partners, HARP is well positioned to include the
involvement of community stakeholders in the development of a response ensuring a client focus with
outcomes that minimise risks and improve the health and wellbeing of people with hoarding behaviors who
neglect themselves and their environments.
9.
Merri Community Health Services (PHaMs)
Not all PHaMs work with people who hoard and/or live in squalor, though the Commonwealth PHaMs
guidelines provide flexibility for this to occur. PHaMs clients can have a 6 month break from the program to
see how they manage themselves, and can return should they need to without having to re-enter via the
waiting list.
Two years ago the Merri Community Health Service PHaMs decided to address the needs of people with
hoarding behaviours and/or who were living in squalor, including them in their client priority list that
determines eligibility and waiting list access (refer Attachment 2: Case studies).
a) Services provided for the person with a hoarding/squalor condition are:
•
•
•
risk assessment; living skills development- including assistance with cleaning and community
linkages; council services (regular weekly rubbish collections, health promotion, insertion of smoke
alarms)
reconnecting the person with family, friends and other community support services - whatever is
appropriate and/or important
connecting with GP/clinical services if appropriate.
b) Services are provided to the carer/family members (refer Attachment 3: Information session).
c) Hoarding and/or squalor data has been collected for this program from March 2010 – October 2011
(refer Attachment 4: Merri CHS/PHaMS - March 2010-October 2011).
10. ChildFIRST/Family Services
DHS funds Child FIRST (the community intake) and family services to receive referrals for vulnerable
children and families where there are concerns for the wellbeing of the child or young person. A referral
may include concerns regarding the impact of the parent's hoarding behaviour or squalid living conditions
on a child, or such conditions may be identified during the course of family services support. Where the
living conditions are identified as impacting on the child's wellbeing, family services will support the family to
make changes to address the situation.
Family services play a critical role in promoting outcomes for vulnerable children and families, and provide
a range of service interventions with a whole-or family focus. The focus includes strengthening the
capability of parents to provide basic care, ensure safety and promote their child's wellbeing.
Page 109 of 131
11. Local Government Environmental Health/By Laws – the need for flexibility
within regulatory frameworks
Neighbours will more than likely complain to their local municipal council about dogs barking all the time or
some other type of concern about animals, or the person who is their neighbour or neighbours property which results in a visit by a council officer (i.e. EHO; Local Laws, Animal Management Officers (AMO) or a
Planning Enforcement/Investigative Officer) to investigate the concern.
In some cases a squalid living environment and/or hoarding household might be identified. Reliable signs
that council officers might notice on approaching the property are a stench when approaching the door
and/or windows blacked out, particularly in the front.
Apart from a regulatory approach as defined by State Laws (refer 9.1.3 Environmental Health; 9.1.10
Animal Health Field Services; 9.1.15 MAV) some, but not all council’s have a Local Law enabling a broader
investigative approach to a hoarding and/or squalor complaint or concern. How council officers respond is
integral to a successful outcome.
In cases where there is no such Local Law, a council department might develop their own policy and
procedures which provides capacity to respond often more flexibly, one not limited by time constraints as
required by some regulations, therefore one that enables longer term management.
Council officers, due to the regulatory environment they work in, more often than not respond to the
symptoms of hoarding and/or squalor not the cause. So for example, slipping a Notice under the door for
action will not engage the person nor help them understand what the concern is. The issuing of a Notice will
however commence an administrative process for action, one that builds on itself and will lead to the
Magistrates Court if appropriate action does not materialise. This process often incurs repetitive costs,
potentially wasted employee hours and no sustainable outcome for the person/s concerned.
177
Some officers would say that a more flexible approach than a strict regulatory one would enable a
planned and inclusive response involving other sectors, family members and neighbours working together
to achieve a sustainable outcome. Commencing from an understanding that the person who hoards has a
mental health condition presents a different premise to plan a response from.
Cost retrieval for continual one off clean ups can be an issue for some councils. In some cases, where the
person owns their own home, the Council can ratify that the debt for the clean ups is placed against the
value of that person’s property, to be recouped when the property is sold.
Three possible areas for improved service response to hoarding and/or squalor cases as they present to
any part of council business could be:
•
Be aware, plan and draw on all council programs able to respond to a complaint or case
•
Develop a traceable Council Case Coordination quality system, one that registers a concern/case;
indicates which part of Council is responding to it; decides who else needs to know about it as well as
monitor and review concern/case progress.
•
Identify costs retrieval mechanisms – billing the person in these circumstances will rarely satisfy the
debt owed.
177 Ken Waixel, City of Port Phillip, Coordinator Parking Enforcement. Previous experience City of Bayside Local Laws, RSPCA, CFA.
Page 110 of 131
Attachment 1:
North and West Metropolitan Region Hoarding Forum
Creating space for change:
Sorting through the responses to
hoarding and environmental neglect
A free Forum for programs
and services in the North and
West Metropolitan Region to
come together and work
towards improved outcomes
for clients experiencing
behaviours associated with
hoarding and environmental
neglect.
The focus of the day will be on
capturing existing expertise from
specialists such as Dr Chris
Mogan as well as creating space
for change across a range of
program areas and community
service organisations including:
• Housing and homelessness
• Aged Services
• Mental Health
• Disability Services
• Children, Youth and Family
• Metropolitan Fire Brigade
• Local Government
• Public and Community Health
• Office of the Public Advocate
• Legal Services
When:
Wednesday 14th September
Time:
9.30 am—4.00 pm
Where: William Angliss Institute
1st Floor Conference Centre
555 La Trobe Street,
Melbourne.
Cost:
Free, a USB stick full of information
will be provided on the day.
RSVP by Monday 15th August 2011
Please register your interest with Kate Rice.
[email protected].
For any inquiries call Kate on 9375 3774.
We will confirm attendance shortly after
This forum is presented by Wintringham with funding from the Department of Human Services and the
Department of Health and the valued support of a range of community service organisations across the region.
Page 111 of 131
Attachment 2:
Merri Community Health Service/PHaMs
Case study 1.
Background - CS is a 76 year old man who lives alone in *. He suffers from Anxiety, Depression, Obsessive
Compulsive Disorder and Hoarding Behaviours. He worked for many years in the Aviation industry, until he
was retrenched 10 years ago. He has severe scoliosis of the spine and needs a walking aid. He has also had
prostate cancer which has rendered him incontinent. He receives Meals on Wheels and occasional assistance
from Council for modifications to his home in order to maintain his independent living.
CS is a cautious, isolated and proud man who struggles to cope with change and support from outside his
home. For example, he cannot cope with two or more appointments in a week and does not let neighbours or
friends inside his home. CS speaks that the role of information has had in his life which allowed him to work as
an engineer. CS still collects information in the form of newspapers, catalogues and receipts; he also does not
discard items, partly in fear of the rubbish being blown away, rather than dropping into the rubbish truck. As he
has OCD, all food containers are thoroughly cleaned and then kept in various piles and rooms around his
home. He is unable to access much of the 3 bedrooms, his kitchen benches are covered in items, and half of
the floor space is filled with items.
Intervention - CS was referred to PHaMs (Mental Health Outreach) by MCHS Allied Health Occupational
Therapist in conjunction with a MCHS (Merri Community Health Service) Community Nurse. This referral
process was seamless as service units regularly collaborate in order to provide targeted role defined care and
joint care planning on the shared database. Collaborative relationships and structures also assist in the sharing
of information and support with the care team.
PHaMs was requested due to the complex nature of CS’s physical and mental health needs. The O.T. focuses
on CS’s physical or structural needs, such as moving the toilet inside and having an appropriate chair. The
Community Nurse works with CS on his physical health needs particularly his prostate and incontinence
issues, and the need for a personal alarm.
CS has identified to me that he would like to reduce the fire risk in his home, widen the pathways to allow him
to use a walking frame and to consider selling his home to move into a smaller property. I work with CS to
develop strategies that support him to reduce the flow of papers/catalogues into the home, to develop sorting
and storage strategies and to develop new patterns of thinking and behaviour that facilitate the removal of
items from the home.
Together we can now sort items and on a good day, fill a recycling bin!
Outcome- CS remains engaged with all three professionals who are difficult for him to tolerate, however we all
engage in regular communication and pace our contact with him. CS’s environmental safety has been
enhanced, in terms of additional structural supports and a reduction in fire or fall risks. CS’s physical health has
improved as he is supported to access appropriate medical care and to reduce his compulsive intake of
particular vitamins. From a mental health perspective, he continues to remain engaged in change
conversations and he has begun to increase the frequency of cognitive behavioural exposures to the anxiety
associated with his sorting and discarding of possessions.
Page 112 of 131
Case study 2.
I have two sons. It’s my eldest son who collects things, shoes, newspapers, pots for plants, pieces of wood, and
boxes of nails. It started with pieces of material.
When he was a little boy, he liked to study snails and insects and would keep them in a bug catcher. He always
liked animals. It was good he liked snails, he would catch them and I would use them in my spaghetti.
He used to work with my husband at a material factory. Then my husband had a stroke and for one year was in a
hospital on a drip. He couldn’t speak anymore. After the hospital, he went to a nursing home for seven years and
then he died. My husband has been now dead for 10 years.
After my husband’s stroke, my son for two years kept working at the factory. But he started to bring home pieces
of the fabric. My son would say ‘it’s too good to throw away’ when I asked him why he would bring it home. He
doesn’t listen to me.
He loves books, books are good, there is nothing wrong with reading, but he brings too many. He loves
Collingwood, it’s good to have football, football scarves, football umbrella but just collect one thing, not lots of
things.
Now my son doesn’t work and everyday he brings home more stuff. The basement is full, I can’t sit on the
veranda and have a coffee, and there is stuff on the table. I can’t hang my washing on the line under the
veranda, there is too much stuff. I can’t walk down the hallway; there is only a small path. I tell him ‘if you don’t
stop with this collecting, I will hurt my leg on all this stuff’. He bought home all these boxes of nails, I said ‘Why,
you don’t fix anything, you are not a handyman’. ‘Why do you have all these boots, you don’t go to the snow’.
I went to the doctor, he said my son is an adult he can do want he wants. The doctor has given me two tablets to
take in the mornings, so I can relax. My son has is 48 and he has his own house with renters so he gets his
money from them. I want to get a smaller house, but he says this is a good house.
I also have another son, I look after him, and he has a disability.
I think my son misses his father; they used to go to soccer and do lots of things together. My husband came to
Australia when he was young so he knew all the places to go to. I don’t know all the places to go.
I still have my own room; he can’t put stuff in there. A friend came and cleaned out the basement, now it’s full
again. If I put stuff in the bin, sometimes it’s ok, but if he sees it in the bin, he will get it out again.
My daughter is sick of it too, for six months she didn’t come around with my grandchildren because it wasn’t safe
for the kids and they don’t want to see the rubbish. I am sorry for this.
I want to relax for one hour in the afternoon, I go out to relax. It’s good to get away; I go to a walking group.
Page 113 of 131
Attachment 3:
Page 114 of 131
Attachment 4: Merri Community Health Service – PHaMS program
Data collection March 2010-October 2011
Gender
Age
Housing
Income source
Co morbidity
Living situation
Referral source
Status
F
Hoarding
/ Squalor
H and S
41
Privately owned
DSP
ID/low I.Q.
H
H
H
60
65
50
Privately owned
Privately owned
Privately owned
DSP
DSP
Husband is
employed
schizophrenia
OCD and anxiety
Anxiety, possibly
autism spectrum
F
H and S
55
Privately owned
DSP
PTSD
Many cats
M
H and S
55
Privately owned
S
H
60
76
Privately owned
Privately owned
F
H and S
56
Privately owned
Employed full
time - librarian
ABI and
depression
ID
OCD, anxiety,
agoraphobia.
Depression
Alone
F
M
Workers
compensation
DSP
Aged pension
F
H and S
42
Private rental
DSP
Depression,
PTSD, RSI
MCHS community
nurse
Exchange
Gambler’s help
Self – from PHaMs
community
sessions
MCHS community
nurse
Financial
administrator
Council
MCHS community
nurse and OT
Building Family
Skills Together,
Mind
MCHS Integrated
Family Services
Deceased – cause unknown.
M
M
F
Mother removed due to
extremely poor health
Alone
Alone
With husband and 3 children
F
H
52
H and S
48
Employed full
time, mental
health nurse
DSP
Depression,
OCD
M
n/a
With Mother and younger
brother who has a disability
F and F
H and S
DSP
Multiple physical
health
M
H
45
and
47
53
Lives in Private rental,
has own home which is
rented
Lives with mother in her
own home, has two
private rental properties
Privately owned
Depression
F
H
31
Public housing
Self employed –
antique dealer
and handy man
DSP
With 4 others who have ID
and mental health issues, 5
cats, 8 dogs
With partner
PTSD
With 2 children
M
S
57
DSP
ID
Alone
M
H and S
67
Lives in house owned
by father
Public housing
DSP
Depression
Alone
Privately owned
Alone
Alone
With autistic adult son
With 3 children, one who
has autism-child protection
involvement
With Partner
Page 115 of 131
Self – from PHaMs
community
sessions
Mother via Carer
Links North
Current PHaMs client
Current PHaMs client
PHaMs closed-not engaging
Client closed
Current
Current
Closed by client due to worker
notifying child protection of
concerns.
Current
Current
Moreland City
Council
Current
Self – from PHaMs
community
sessions
Other MCHS
PDRSS group
Self
Closed by client as achieved
goals
Other MCHS
program
Current
Current
Current
Appendix 13: DH Aged Care Community Service Organisations
delivering Low Cost Accommodation Support –
as at September 2011
Region
Organisation
BSW
Brophy Family and Youth Services Inc
CCP
√
HSAP
BSW
St Laurence Community Services (Barwon) Inc
√
√
Gramps
Centacare Catholic Diocese of Ballarat Inc
√
√
LM
Haven (Loddon Mallee Housing Service)
√
√
Hume
The Salvation Army Pathways
√
√
Gipps
Quantum Support Service Inc
√
√
N&W
Doutta Galla Community Health Service Inc
√
√
N&W
Merri Outreach Support Service Inc
√
√
N&W
North Yarra Community Health Inc
N&W
The Salvation Army (Vic) Property Trust –
Western
N&W
Society of St Vincent de Paul (Vic)
√
N&W
Western Region Health Centre Ltd
N&W
OPHR
√
√
√
√
√
√
√
Wintringham
√
√
EMR
The Salvation Army (Vic) Property Trust –
Eastern
√
EMR
UnitingCare Community Options
SMR
City of Kingston
√
SMR
ERMHA – Eastern Regions Mental Health Assoc
Inc
√
√
SMR
Inner South Community Health Service
√
√
√
SMR
Peninsula Community Health Service
√
19
TOTAL
16
13
5
√
*Community Connections Program (CCP)
*Housing Support for the Aged Program (HSAP)
*Older Persons High Rise Support Program (OPHR)
Page 116 of 131
Appendix 14: Department of Human Services – Housing and
Community Building (SfHRT)
Page 117 of 131
Appendix 15: Department of Human Services - Housing and
Community Building (SfHRT)
Page 118 of 131
Appendix 16:
A)
MFB and CFA research studies
MFB - Worcester Polytechnic Institute [WPI] Massachusetts, (USA) studies
MFB attracts WPI undergraduate students to undertake studies on a range of subjects such as the two
mentioned below. The studies are submitted to WPI as evidence of completion of a degree requirement. WPI
routinely publishes these reports on its website without editorial or peer review.
178
Study 1: An Analysis of Fire Incidents Involving Hoarding Households - May 22, 2009
This project was sponsored by MFB and undertaken by three WPI students (supervised by WPI and MFB),
who examined hoarding households from a fire safety perspective looking at hoarding related fire incidents.
The result presents a comprehensive fire fatality and incident study of all preventable community residential
fires involving hoarding that occurred within the MFB district of Melbourne between 1999 and 2009 (March).
The goals of this project were to obtain information about the victims of fire incidents in hoarding households,
to quantify the characteristics common in these incidents and to identify if risk reduction advice could be
developed from the evidence provided by the study. This information could be used by MFB and other
organisations to raise awareness, identify key triggers and contribute to intervention programs for people
affected by this disorder. The following objectives were pursued:
•
develop a greater understanding of the nature of hoarding fires
•
find the prevalence of unorthodox use of utilities among hoarding fires
•
create a profile of victims involved in hoarding fires
•
draft an informational brochure to educate internal and external stakeholders about hoarding.
Forty-eight hoarding fires were identified and were found on average to be more severe than ordinary fire
incidents, 10 resulted in a fatality representing 24 per cent of all preventable residential fire fatalities that
occurred over the same time period. Comparisons within the study revealed that while an average household
fire required about seven firefighters to fight the fire, a hoarding household fire requires on average 17
firefighters to do the job and the average cost of structural damage to the property increases from $12,500 to
$100,000.
Only 26 per cent of hoarding households had a working smoke alarm, compared to the household average of
66 per cent. It is worth noting that with 23 per cent of these fires occurring in OoH properties which are
provided with hard wired smoke alarms which reduce the hoarding households with smoke alarms in those
living outside of public housing as three per cent. In 38 per cent of hoarding incidents, impeded egress or
access was specifically mentioned in incident reports, but no correlation could be made between blocked
egress and hoarding level.
Seventy-three percent of hoarding fires occurred in households where the occupant was over 50 years old,
77 per cent male and reportedly uncooperative in 10 per cent of incidents. About 30 per cent of these fires
occurred in apartments while 70 per cent were in homes. Twenty-three percent of incidents occurred in public
housing facilities.
The most common cause of hoarding fires was cooking (accounting for 39 per cent of incidents and yet it
caused none of the fatalities), a heater, open flame, or lamp and electrical faults were the other most
common causes. Smoking caused 12 per cent of the fires but accounted for three fatalities. The source of
ignition in hoarding fires is not much different than the average residential fire however 13 per cent of these
fires started from an unorthodox use of utilities.
As a result of the study MFB developed risk reduction advice for hoarding households which is to:
•
•
•
•
•
install smoke alarms and test them
unblock exits and widen internal pathways
check utilities are connected
prioritise removing clutter from around cooking area and stove tops as 39 per cent of fires in hoarding
homes result from cooking
ensure clutter is removed from around heaters and electrical items and discourage the use of open flame
as combined, these factors account for 44 per cent of fires in hoarding homes.
178 Refer WPI http://www.chemistry.sc.chula.ac.th/bsac/MFB%20Hoarding_Project_Proposal.pdf
Page 119 of 131
On the basis of the information resulting from the study, MFB risk reduction advice would potentially reduce
the risk for the occupants of these homes by a significant degree. MFB promotes risk reduction in the first
instance as opposed to large scale removal of all hoarded items from the residence. MFB has developed a
further study proposal to quantify incidence rates since March 2009.
MFB aims to reduce the high fire risk of people affected by hoarding by addressing their other needs through
an integrated multi agency approach, applying risk minimisation techniques.
Improved MFB recording system
Since the completion of the 2009 analysis, MFB has identified a significant increase in the number of
households in which hoarding is identified through the provision of an MFB emergency response system.
Current estimates are one incident every 14 days.
MFB understands this increase is attributed to higher organisational awareness as well as an increased
capacity for operational firefighters to formally identify hoarding and/or squalor households.
Study 2: Analysis of Preventable Fire Fatalities of Older People and People with Disabilities: Risk
179
Reduction Advice for the Community Care Sector – May 2, 2011
MFB sponsored four students from WPI to undertake a comprehensive fire fatality study of all preventable
residential fire fatalities that occurred within the MFB district of Melbourne between 2000 and 2010. Older
people and people with disabilities were found to have been at a greater risk of fire fatality due to frailty,
minimised mobility and lack of appropriate or working warning systems such as smoke alarms. This report
does not directly reference hoarding but highlights recent MFB work effectively targeting people most at risk.
Many people in this cohort also receive community services, thereby placing the community sector in a
unique position to assist vulnerable groups. The researchers aimed to provide simple fire safety solutions for
sectors to utilise and potentially incorporate into policies, such as:
•
•
identify clients who are smokers, have reduced mobility and live alone
encourage installing photoelectric smoke alarms in these homes (with 10 year long life battery, thereby
eliminating annual battery changes).
B) CFA
The CFA is funding a project to research fire incident information to include the effects of hoarding on fires
and CFA response personnel.
The aim of the project is to collect and report any existing information available across regional Victoria in
relation to hoarding cases, and the possible implications to CFA. This is a preliminary project to increase CFA
knowledge with a view to developing a more comprehensive procedure and managing future incident
reporting and personnel safety.
The research at the time of this request (Oct 2011) has shown:
• that within the CFA community area there are noticeable anecdotal numbers of ‘hoarding’ cases
• evidence from other fire fighting agencies shows there is high risk of a fatality if a fire results within these
households
• some agencies are on the way to developing a process to deal with and manage their clients with this
disorder, very few are reporting these cases specifically as hoarding
• the numbers specified are largely anecdotal or part of a larger category titled ‘high risk’. This data is
supported through LGA’s Local Laws, Environmental Health, Community Development, Aged and
Disability Services and external Case Managers working through smaller funded agencies.
179 Aufiero, M., Carlone, T., Hawkins, W., Murdy, S. Analysis of Preventable Fire Fatalities of Older People and People with Disabilities:
Risk Reduction Advice for the Community Care Sector. An Interactive
Qualifying Project Report submitted to the Faculty of Worcester Polytechnic Institute in partial fulfilment of the requirements for the Degree of Bachelor of Science (May 2011).
Page 120 of 131
Appendix 17: North and West Metropolitan Region Hoarding Training
Needs Analysis report - January 2011
A hoarding training needs analysis survey was developed to ascertain the training needs of staff working with
those who display hoarding behaviours, in Melbourne’s North West metropolitan region. It was undertaken by
Managers from PHaM (Merri Community Health), TRAAC (St Vincent’s Health) and Community Housing and
Support: Northern/City (Wintringham).
The survey was distributed to staff participating in the North and West Regional Hoarding Working Group as
well as other known service providers working with those who display hoarding behaviours in Melbourne’s
rd
North West. The survey ran from December 14, 2010 to December 23 , 2010. It was completed “on line”
using the Survey Monkey tool.
OUTCOMES
•
100 respondents completed the survey from approximately 40 different services. Agencies were as
diverse as Aged Care Assessment Services, council, home nursing, case management programs,
hospital, community health, HARP, residential care and housing.
•
discipline backgrounds were:
- 35% allied health
- 18% housing
- 11% case management
5% mental health
- 34% aged care
Table 12: Results Melbourne NW Metropolitan Region Hoarding TNA report January 2011
Most challenging aspects:
Aspect
Response
count
OH&S legislation and organisation policies and procedures
59
Chronic nature of hoarding/ability to manage property
65
Supports available
51
Determining short term objectives
36
Determining long term objectives
33
Resources available to clients
54
Hard to engage
44
Time and resources required
51
Knowing treatment options
42
Knowing how to refer to
44
Client denial of issues
65
Page 121 of 131
Training topics of interest
Topic of interest
Responses
Practical strategies
88
Aged care clients
66
Impact of capacity
61
Squalor
51
Animal hoarding
31
Peer support
20
People in public housing
52
People in private rental
37
People in their own homes
53
Preferred learning formats:
The top three challenging aspects of this work were client denial of issues, chronic nature of hoarding and
OH&S concerns.
Page 122 of 131
Useful resources
Topic
Source
Animal Hoarding
Refer: http://www.tufts.edu/vet/hoarding/resource.htm
Website of the Hoarding of Animals Research Consortium in the US, for
your paper. It contains links to a number of scientific papers.
Ayers, C.R., Saxena, S., Golshan, S., & Wetherell, J. L, (2009).
International Journal of Geriatric Psychiatry, 25, 142-149.
David F. Tolin, Randy O. Frost, Gail Steketee.
Pub. Oxford University Press, Inc. (c) (2007)
Outlines a scientifically-based and effective program for helping
compulsive hoarders dig their way out of the clutter and chaos of their
homes.
NSW Partnership against homelessness. (August 2007).
Refer: http://www.dadhc.nsw.gov.au/NR/rdonlyres/50B41AD4-57B54BF3-8989-FD5A528FADE6/3251/Squalor_Guidelines.pdf
Kim, H., Steketee, G., & Frost, R.O. (2001). Health & Social Work, 26,
176-184.
Randy O. Frost, Gail Steketee, USA
Refer: http://www.ocfoundation.org/hoarding/welcome.aspx
Green Clean Team (Bendigo and Brunswick : 0407 469 468 )
www.greencleanteam.com.au/
estate d-clutta (Eastern Metro region) (www.estatedclutta.com.au)
Skeletons in the Closet (North West Region) Phone: 0418 186 056, or
http://www.skeletonsinthecloset.com.au/
In a Minnit Property Maintenance – Keilor East: 0412 365 951
Orasi Cleaning and Maintenance – Yarraville: 0411 733 034
Cleaning by Mark – Bundoora: 0415 694 969
Buzz Cleaning – St Kilda Central: 9563 3534
ATC Cleaning Services – Frankston Heights: 5976 3199
Thornbear Property Solutions – Keilor East: 9366 0690
CCM Cleaning Services – Epping: 0411 106 516
Randy O.Frost, Gail Steketee. USA (2010)
Age at onset and clinical features of late
life compulsive hoarding.
Buried in Treasures, Help for Compulsive
Acquiring, Saving and Hoarding.
Guidelines for field staff to assist people
living in severe domestic squalor
Hoarding by elderly people
Obsessive Compulsive Foundation –
Hoarding Centre
Private cleaning companies sourced by
local providers
Stuff: Compulsive Hoarding and the
Meaning of Things
The Hoarding Handbook: A Guide for
Human Service Professionals.
Treating elders with compulsive hoarding:
A pilot program. Cognitive and
Behavioural Practice.
Understanding Compulsive Hoarding
Working with People with Hoarding
Behaviours, (DVD).
Bratiotis C., Schmalisch, C. S., Steketee, G. (2011)
The first of its kind, organised around the common ways hoarding
captures the attention of social service providers (social workers/human
service providers in a broad range of fields), this user-friendly guide
provides tools to assess the problem, to coordinate and delegate tasks
and to work directly with reluctant hoarders and those affected by the
hoarding. Chapters give hands-on guidance and decision trees for who
should be involved and what strategies are needed for each case.
Refer: http://www.ocfoundation.org/hoarding/community_services.aspx
Turner, K., Steketee, G. & Nauth, L. (in press).(2010)
Thobaben, M. Source: Home Health Care Management & Practice
18(2): 152-154.(2006).
Abstract: Compulsive hoarding is the excessive acquisition of material
goods and difficulty discarding worthless items until they interfere with
day-to-day functions such as home, health, family, work, and social life.
There are a higher percentage of older adults who hoard compared to
younger people. Home health nurses will need to assess the functional
level, competency, insight and understanding of clients who
compulsively hoard. Home health workers may be able to teach
techniques that assist with accumulating less clutter. No one treatment
has been found to be effective for all compulsive hoarders.
Victoria, Australia. Copyright Vision Australia (2010)
Funded by Victoria Government Home and Community Care Training
allocation.
Page 123 of 131
Acronyms and abbreviations
ACAS
Aged Care Assessment Services
BAW
Bureau of Animal Welfare
CACP
Community Aged Care Packages
CAV
Consumer Affairs Victoria
CFA
Country Fire Authority
CTO
Community Treatment Order
DoHA
Commonwealth Department of Health and Ageing
DSM
Diagnostic and Statistical Manual of Mental Disorders
EACH
Extended Aged Care at Home package
EACHD
Extended Aged Care at Home Dementia package
DH
DHS
Victorian Department of Human Services
DoJ
Victorian Department of Justice
DPI
Victorian Department of Primary Industries
EHO
Environmental Health Officer
FaHCSIA
Commonwealth Department of Families, Housing, Community Services
and Indigenous Affairs
FMO
Financial Management Order
HACC
Home and Community Care
MAV
Municipal Association Victoria
MFB
Melbourne Metropolitan Fire and Emergency Services Board
NGO
Non-government organisation
OCD
Obsessive Compulsive Disorder
OCPD
Obsessive Compulsive Personality Disorder
OPA
Office of the Public Advocate (Victoria)
RSPCA
Royal Society for the Prevention of Cruelty to Animals (Victoria)
SfHRT
Support for High Risk Tenancy Program
VCAT
Victorian Civil and Administrative Tribunal
Page 124 of 131
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Page 126 of 131

Discussion Paper on hoarding and squalor 2012

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